“To this day I remember the nurse placing this warm body onto my chest. I looked into his eyes and instantly felt an incredible bond. As quickly as this happened however our little boy who we named Ollie, our Olliebobs was taken off of me. I was not well and was rushed into theatre. A few hours later, and thankfully, I found myself holding this precious baby in my arms again. This time I had two more bundles of joy jumping on my bed desperate to meet the new edition. In that moment I didn't feel like life could get any better.”
Batten Mum and Advocate
The phrase “A Beautiful Tragedy” came to me one day. I did not know at the time if I had heard it before so I did a search on the internet. As it turns out it has been used for a name of an album by a heavy metal rock band. It was also used as a title to a movie about a young ballet dancer. Who knows where else it may have been used. On this particular day I had thought of it in the context of Batten Disease. There is nothing beautiful about a tragic occurrence! Tragedy leaves people feeling hopeless and in shock over what has transpired. Questions arise as to why the events have taken place and why it involved a particular individual or group. It leaves some feeling philosophical about life and some may have questions that are spiritual in nature. I was personally thinking in terms of tragic love stories, like Romeo and Juliet. Concerning love, it is probably never displayed more boldly than it is in times of tragedy. Think about it!
The emotions that pour out of these events are just so powerful. Are they not? Something like Batten Disease is so very ugly. Yes, it involves the most beautiful of persons and to me, their stories are the most beautiful. The course of the disease, however, is not so pretty. Even so, the bond that develops between the warrior and their caregiver is like none other. It produces the most beautiful details of pure love and devotion. Extraordinary devotion. Going through such a thing can make or break a person. Adverse circumstances and events often change people and shape their character. Sometimes for the better and sometimes not. Sometimes the changes in one person can affect another. In fact, some will take the adverse circumstances that are faced and will use the experience to help other people in a similar situation. Think about people that have gone into battle and who have survived. To them, the trials of everyday life are nothing to sweat over. This because their character was formed over adversity and they have learned to not sweat the “small stuff”.
I hate Batten Disease because I know that it produces tragic results that reside with the families that have lost that which is the most precious to them. The details of the journey can be extremely moving. This, because those details express the outpouring of love towards these young warriors in an extraordinary way. The details also express the love and dependence of the young warrior upon their caregiver. The bond is absolutely like none other. It is the most heart wrenching experience when it is necessary to say goodbye and only the love that was expressed through action remains along with a void that can never be filled. Only the sweet memories of the experience can carry a person through such a thing. That and the promise that is often made to carry on as best as one can. These kids change people and most often it is for the good of others. Yes, it is tragic but many of the details are beautiful.
It is a tragic thing whenever a child is diagnosed with a fatal disease. It is always a positive though, when treatment and progress towards a cure comes about. It is also a positive when you see people getting involved and taking action that not only benefit their own family, but also helps others that are involved in the same battle. Such would be the case when it comes to the couple that is Mike Carroll and his wife Lucy Faith. Anybody that follows children with Batten Disease knows them as Ollie and Amelia’s parents. Ollie and Amelia have two older brothers, Danny and Micky. Neither have Batten Disease but both Ollie and Amelia were diagnosed with the CLN2 variant of Battens. They are two of the most adorable little Batten warriors that you will find. Ollie’s Army is a well known Facebook page and there is also a website with the same name. I remember the type of reaction that I had the first time that I viewed the page. This, although I can’t remember what my first thought was. I know that it was something like, “Oh wow, what an attractive family.”
The fact that they are from the UK had me drawing a comparison between Mike and Lucy and the couples from the Royal Monarchy. At the time, my feelings were that as far as appearance is concerned, those people had nothing on this attractive young couple. I approached Lucy initially about doing a short blog about her family at the beginning of my time as a writer/blogger. I later decided that this family’s story needed to be told more fully and so I approached Lucy once again. One thing that I noticed while gathering information about her family is that Lucy herself is very well written. She didn’t require my help in telling her own story. It is for this, and other reasons, that I so appreciated her allowing me to place her family’s story in this blog. From the very beginning, Mike and Lucy have sought to be leaders in spreading awareness as they battle Batten Disease. Like the other families that have been forced to take up this battle, they find themselves in the midst of adverse circumstances. I know that there has to be many difficult days but also ones that provide so many priceless memories. After all, they are parents to both a prince and a princess. For that reason alone, they will be forever royal to me. Mike and Lucy's story would be so beautiful, with or without Batten Disease being part of it. Like with so many of these stories, it all begins with two people that fall in love and this story is no exception to that.
Their Story Begins
Mike Carroll and Lucy Faith met one another as teenagers. Lucy was sixteen and Mike was seventeen. They were both working at a leisure center as lifeguards in Lucy’s hometown of Poyntown. The town of Poyntown resides in Cheshire, England. Mike lived just up the road in a town named Bollington. Although so close to one another in the places they lived, it was not until this time that they would meet. Lucy thought that it might sound a little cheesy to say so, but for her it was love at first sight when it came to Mike. Isn’t that often the way it happens? In addition to Mike’s good looks, Lucy found him to be incredibly funny. Lucy would tell me that she felt at the time that Mike wouldn’t look twice at her. You know what? I bet it didn’t take Mike more than one look to notice Lucy. The attraction was mutual and their future together would begin then and there. One of the other things that attracted Lucy to Mike was that he had a driver’s license and she was still too young to have one of her own. This means that Mike was not only good looking but he was useful! They would go on their first date with a group of their peers and from that time on they were inseparable. From then on, there would be a lot more dates and many late night conversations. There is no doubt that they discussed a future together and all that they would want in life. Things like career goals, marriage, and having a family.
You just know that with both of them being lifeguards, they had to be somewhat athletic. That would be an understatement in Mike’s case as he was a professional footballer prior to meeting Lucy. What do I mean by that? Do I mean like with pads and a helmet? No, you silly Americans. In this country we have incorrectly labeled it soccer, but in the rest of the world the sport is known as Football. Go figure! You do use your feet to kick the ball. In various places throughout the world, Major league Football is associated with clubs that produce future players through a youth system. Kids who show promise are promoted through the ranks until they reach the top. Youths are actually signed to sports contracts. This just amazes me! As an example, Mike had been playing for a club in Everton at age 11 after which he was signed to a two year contract by a club named Oldham Athletic. Mike would be hampered by injury but he continued to pursue his dream of playing at the top level of his sport. It was not only a dream but also a very possible reality as he was just that good. In fact, At one point Mike met a scout that was sent to watch him. The scout was sent directly by the manager of the Manchester United which is part of the Premier Football League. He was just that good and it doesn’t get any better. Unfortunately, he continued to have problems with injuries. Although he would sign for another club after recovering, he would have to give up the sport as a professional. Football was Mike’s life and a long career in it was his dream, but it was not to be. He would, however, press on with life and this is about the time that Lucy would enter it. Mike continued to play football. First semi-professionally and locally after meeting Lucy.
Together, Mike and Lucy would start their family and an entire life together. Lucy had been studying health and social care alongside working a part time job at the time that the two of them had met, She would later receive her degree. Mike would go on to receive training in school to become a bricklayer. Now, we are not talking about brick fences and retaining walls in your front yard, although it could include that. Construction in the UK with brick is obviously very popular in residential and commercial construction. Mike had a desire to, one day, have his own company as a contractor and bricklaying seemed like a good fit. Is that a pun? I am not sure. Anyways, as they wanted a family together, perhaps his children could be part of the business if they so desired. Mike would set up his business later, in 2014. First thing first though. It is a perfectly good and normal thing for a young couple to want to raise a family. Mike and Lucy would be no exception to that. In fact, they would want a fairly large family as they both loved kids. One of the things that attracted Mike to Lucy was her attitude towards caring for others. At the time that they had first met, Mike had a nephew who was two years old. He observed that Lucy took great care with the little guy and that impressed him. It was obvious that she would be a fantastic mum to his children and we all now know that to be true! We often times do not think about the possible challenges that may come along when the kiddos start to bake in the oven. You know what I mean? There can be complications then and, of course, during their birth. Lucy would face her fair share of difficulties to say the least. She and Mike would face the difficulties together and the whole thing would begin four years after they first met.
Building Their Little Team
It was then that Lucy found herself pregnant with their first child. She did not get off to a very good start as she found herself to be extremely sick. This would be a sign of things to come. Difficulties in her pregnancies. At the time, she was working full-time as a nurse in a baby nursery and she was working ten hours plus per day on her feet. Mike was also working full-time as a builder and they did not yet have a home of their own together. They needed to move quickly. Her sickness would die down and her pregnancy would begin to go smoothly. That is until the 34th week. Lucy started feeling very tired and the doctor signed her off from work so that she could rest. A day after finishing work, she went into premature labor. Their baby boy had decided that he couldn’t wait any longer and he needed to make his exit six weeks early. Lucy told me that as a mother to be for the first time, she was absolutely terrified. This thinking that their baby was going to die. That feeling was probably aided by the fact that the labor room was packed full of medical professionals. The outcome, however, would be challenging but overall positive!
Their little man, which they named Danny (after the song Danny Boy) was born March the 13th of 2007. He weighed 5 pounds and 12 ounces. He was kind of a little guy but that was to be expected with his early entrance into family life. They were lovingly referring to him as their “little bag of bones Danny”. Obviously he was very adorable. So perfect and complete. He had all his fingers and toes plus, he was covered in brand new baby skin. Lucy had her first child and Mike had a son! Football! Oh yes. You just know that dad was thinking about that! No one ever forgets that first child being born and for that reason, Danny will always be special! Danny would struggle to feed and would end up dropping all the way down to five pounds even. Lucy said that he was the tiniest little thing they had ever seen. The staff at the hospital had to insert a feeding tube that went from inside his nose and traveled to his tummy. In addition, they gave him light therapy. Lucy described the love that she and Mike had for little Danny, “The love we felt for him was so powerful. I spent days crying, wishing that I could make him better and take his pain away.”
Things would continue to improve though for Danny. He would get stronger with each passing day and at last, the doctors said that he could go home with mom and dad. The only problem was that because of Danny’s early arrival, they had no home to go to. The final details on the house that they were due to buy had not been finished. Mum and dad to the rescue! They brought little Danny home with them to Lucy’s mum and dad’s until they were finally able to move into their new family home. I am quite sure that they were more than welcome there. Danny would continue to face challenges with his feeding as he had severe reflux issues. He could not keep his feeds down after eating. He was, however, a very happy baby. Lucy said that, much like herself, he was a bit of a late night party animal, Danny liked to stay up all night and sleep during the day. Like any new parent that is adjusting to having a new baby, Lucy thought that life was a little crazy back then. However, the challenges that they had faced up to that point were only the beginning. There was much more that lay ahead.
Life moved forward for this family of three. Mike was working lots of hours as a builder and he had started playing football again on the weekends. They were enjoying being in their new home and Lucy was caring for little Danny. Things were good but Lucy was noticing that she was tired all the time. She felt, at the time, that being tired was just part of being a new mom and it never occurred to her that something else could be going on. It was only six months since Danny was born but Mike and Lucy were given the news that she was pregnant again. This is how the news was received by the young couple, “We were over the moon that our children would be so close in age and even more so when we found out we would be having another boy.” Another boy and a playmate for Danny. Another little football player perhaps. Lucy said that she sailed through the pregnancy. That is until the completion of the 31st week. It was at that time that she felt like something wasn’t right. Lucy went straight to the hospital and it was confirmed by doctors that she was in labor. This time it was nine weeks before the baby was due to be born! Oh my gosh! Doctors gave her two options. The first one was to continue with the labor and deliver the baby. Delivering him this early in the pregnancy would bring a risk of death or other issues for the baby. The second option was to use drugs to stop the labor. They chose to try to stop the labor and thankfully it worked. Their newest little man had hung in there for thirty-nine weeks. He was born one week before he was due to make his appearance. It was on June the 17th of 2008 that baby Michael came into this world to join his family.
They named him after his dad but Mike and Lucy would begin to call him Micky. The name really stuck to him and he has been called by that name until this day. Micky weighed in at 7 pounds and 11 ounces. It was, go figure, a bit of a rough delivery. Micky was a bit battered and bruised, but otherwise, he was absolutely perfect in every way. There is something to be said for staying in your place as one should. Because he was so good, Micky got to go home with his family the very next day. This was very different from Mike and Lucy’s first experience and they were so happy that things went the way that they did. They were home and had two little boys! Lucy stated that once they returned home that the real fun started to take place. These two little guys were only fifteen months apart and as Lucy would put it, she “no longer knew the difference between night and day”. She would also admit that she loved every minute of it. Just as Mike had observed with his little nephew, Lucy was good at caring for kids. She loved it! Not only that but Mike had two sons. He was overjoyed! With the exception of having the same reflux issues that Danny had as a baby, Micky was the perfect baby boy. Things were really shaping up. Their boys were not only a blessing to Mike and Lucy but also to all of the extended family and their friends as well.
What do you think Mike did as the boys continued to grow? What else would he do but teach them about football! He taught them everything that he could about the sport that he loved. Both of his sons started walking just before their first Birthdays. Soon after, sounds could be heard coming from the garden as the boys ran after their father. With the the football being kicked you could hear the word “GOAL!!!” being sounded. Lucy said that she could remember how lucky that she felt at the time. She had Mike in her life and he was wonderful guy. She had two beautiful sons. Her feelings towards how life was at this time went like this, “Life was full of fun and laughter and it was more than I could of ever dreamed of.” They both had career goals and a nice place to live. Along with all of this, they had plans to increase the size of their family. First though, Lucy would return to work as Micky turned one. Life was good and it continued on for this family. One thing was for certain. This couple would have no issues with infertility. Just before Micky turned two years old, Mike and Lucy received the word that she was pregnant once again. Things would move along in the pregnancy and at twenty weeks they received the word that they were going to have another boy. Lucy said that it began to become a running joke that they were going to have their own football team at their house. Who could argue that things were starting to look that way. They were so happy with this news. They wanted to have a large family and they were going to have another son!
A Prince and a Princess Unaware
As was the pattern for Lucy’s pregnancies, so it was with this next one. Things would go well for the first thirty-four weeks. Once again Lucy would go into premature labor. I wonder what her thoughts were at this time. Something like, “here we go again!” They were given the same option as before and that was to use the drug that is necessary to stop the labor. They went for it as it had worked well the previous time. It did work well only not without complications. Lucy said that all was fine with the baby but she herself had become unwell. She had to stay at the hospital for a few days after receiving the drug but would recover and return home. It was, however, after a few days that that she began to feel unwell again and she had to return. After receiving a few scans, it was decided that they should go ahead and deliver the baby. Their little baby boy was born four weeks early and he weighed 6 pounds and 5 ounces. This took place on the 13th of January of the year 2011. Ollie was born. A prince unaware.
It never ceases to amaze me how mothers remember things about their children that are so specific. Of course Birthdates but sometimes also specific times and exact weights. Mums are like that. They remember specific things that happened with each child and feelings that were felt. I used the following as my opening quote but it fits perfectly here and it is so worth repeating. From Lucy, “To this day I remember the nurse placing this warm body onto my chest. I looked into his eyes and instantly felt an incredible bond. As quickly as this happened however our little boy who we named Ollie, our Olliebobs was taken off of me. I was not well and was rushed into theatre. A few hours later, and thankfully, I found myself holding this precious baby in my arms again. This time I had two more bundles of joy jumping on my bed desperate to meet the new edition. In that moment I didn't feel like life could get any better.” Due to issues with Lucy’s health, she and Olliebobs had to remain in the hospital for an additional four days before they brought him home. Lucy said that she was thankful for the time that she had with Ollie in the hospital. Four days for time spent just with Ollie. With each one of her boys, there was difficulty but the results made what she would have to go through so worth it. Three boys! She was definitely at this point, well outnumbered, but she was okay with that! Lucy said that even at the very young age that they were, Danny and Micky took very good care of their mum after her return home. She went on to say that they gave the best kisses and warmest cuddles. How wonderful these guys were as they continued to grow. They were and still are, great big brothers and man! Can they kick a football or what?
Mike was continuing to work hard for his family and he had started working towards setting up his own business. As stated before, he felt that it would be possible for his boys to join him in the business one day if they so desired. That would include their new little man that they named Ollie! Lucy continued to care for Ollie and the others but also added to that the pursuit of another degree from the university. This one in Care and Education. She, along with Mike, was driven towards achieving their goals. They had three little boys and yet Lucy continued with her education. It was her third and last year of her degree. She said that she spent that last year juggling all her responsibilities. This included night feeds along with assessments for school. This not to mention potty training and all the other things that mums do for their kids. Just amazing! That is enough to wear anyone out but as Lucy began to get tired she knew something was up. It came as a complete surprise this time but she again received the news that she was pregnant. Lucy said that her and Mike felt a little nervous this time. After all, their boys were still so young. Soon, their nervousness turned to excitement over the fact that they were going to have another baby in the house. They loved kids and couldn’t wait. Lucy said that they were well aware of the need to keep a close eye on this pregnancy, given her prior history. They had a lot of extra scans done of this baby and the bond with this little one was intensified by having them done. Lucy put their feeling in this way, “We had lots of extra scans and bonded with our little baby even before it was born. We watched this little wiggle on the screen get bigger and bigger each week, waving its arms and kicking its feet! It was an amazing experience.”
Twenty-Four weeks into Lucy’s pregnancy they received the news that their next baby would be a girl. With that, the family’s aspirations for raising up their own little football team were gone forever. There would be no team but they were having a GIRL and they were so very excited!! The excitement spread to all three boys and as a family, they were “over the moon!” A daughter and a little sister. Everyone was so happy! The joy, however, was short lived as only three weeks later complications set in. It was at that time that Lucy started feeling unwell again. This happened while out shopping and panic hit everyone. Lucy said that Mike, being the person that he is, was absolutely amazing. He kept the boys calm while getting in contact with Lucy’s mum who took her to the hospital. It was confirmed while there that Lucy was yet again in premature labor. Oh my gosh! This time it was 13 weeks before their little girl was supposed to be delivered. As Mike was rushing back to the hospital, Lucy received some very unsettling information. She was informed that if she was to deliver their baby at this stage, the baby would most likely die. She was again offered the drug that had been used twice now on her. She of course said yes! This time, however, there was an addition complication. Things went drastically wrong. Once given the drug Lucy was sent into anaphylactic shock. That being a life threatening allergic reaction. The hospital room was filled with medical staff who worked to save Lucy’s life. As Mike arrived, he stepped into a hospital room that looked like a scene from a movie. Lucy said that, like always, Mike was her rock as he brought comfort and helped her through her fear! The doctors and nurses managed to stabilize Lucy and her yet to be born girl managed to stay put. Over the next few days Lucy was ordered to bedrest. The doctors warned her that her baby could be born at any time and said that she needed to stay in rest. Lucy said that the days would turn into weeks and their unborn daughter stayed put. It was then that Lucy was allowed to return home with instructions to not move.
Lucy stated that her ability to remain still enough with three little boys running around was nothing short of a miracle. Their baby girl hung on for thirty-eight weeks and it was then that she made her own little dramatic entrance into this world. It was an extremely difficult birth and their daughter had to be resuscitated. This was terrifying to Lucy. Her sister had accompanied her into the labor room this time. Lucy still remembers the look of terror that was on her sister’s face and said that she will for the rest of her life. Lucy was not allowed to hold her baby girl as she had been so used to with her sons. Instead, she was taken away. They took her from her mum for an hour and while that doesn’t sound like a long time, to Lucy “it felt like forever”. Lucy was in the theatre (labor room) and had not known where her baby girl was. All she knew was that Mike had taken off after her as their daughter was taken from the room by hospital staff. She would of course be returned to her mum and amazingly, the doctors informed Mike and Lucy that their daughter was perfect! I had quoted Lucy in the first blog that I did about this family concerning what she was feeling as she held her daughter for the first time. Here is what she had said, “Breathing in that amazing newborn smell, feeling that warm breath on your skin, counting them tiny little fingers and toes. We had just been handed our beautiful baby girl, after a complicated pregnancy, and nearly losing her during labor.” They were now a family of six as the final piece was delivered in the form of this most perfect little package. She was absolutely beautiful. Lucy had this to say about their daughter after her chaotic entrance into this world, “She lay there looking up at me and Mike completely oblivious to the drama which she had created. Little did we know that this would just be how our little girl would roll.”
They had known in advance what they would name each one of their boys before they were born. Things were different with their new princess whom they had not yet picked a name for. Instead they spent hours looking through names trying to decide what would be a fitting name for her. She was to them so perfect in appearance! Finally, the name that was as perfect as their little girl was chosen. Amelia Faith Jasmine. She had been born on the 4th of March in the year 2013. She weighed 6 pounds and 13 ounces. Lucy said that they had never seen a more beautiful baby. This was confirmed by the fact that medical staff was stopping in to see her. They knew about her dramatic entrance into the world and were amazed by how utterly perfect she was. It was at this point that Lucy felt that their life as a family was complete and she looked forward to all of the precious memories that would be formed. So much had taken place during all of her pregnancies but they had all made it through.
The Bonding of a Family
Lucy said that the boys fell in love with their new little sister the moment that they laid eyes on her. In fact, they promised that they would look after her no matter what. There was no jealousy, just brotherly love and kindness. She went on to say that her and Mike felt blessed, thinking that they had the perfect little family. The running joke that they would one day have a complete football team had been broken up by the appearance of little Amelia. However, there were still three boys that most likely would pick up their father’s passion for the sport. As they continued to grow, it became apparent that football would be the king sport at the Carroll home. Even though it was early, so many memories were already being formed. The possibilities for what the future might hold were endless. A family formed by two hard working people, three charming little men, and a little princess. Lucy described the atmosphere in the home so perfectly as the children continued to grow, “Our house was always full of laughter, with children running around and playing. You couldn't walk a foot without tripping over toys. So many things got broken as the boys kicked their footballs around. Danny would spend hours training Ollie up to be just as good at football as he was. To this day I remember his shouting "Ollie heads, Ollie kick, Heads again Ollie. Yes that's it, yay, you have scored!" The cheers and the excitement that warmed our hearts.”
Their life together was a beautiful story in the making. In fact, it was already beautiful. Every family faces problems along the way. That is always to be expected. Mike and Lucy had faced some significant challenges but had made it through. They had their family in place and the future looked nothing but bright. They had many a conversation about what the future might look like as they talked about all that they looked forward to as parents. It was the type of atmosphere that dreams are made of. In the back of their mind, and in the forefront of their conversations, were all the life events that one would think of for all of their children. Neither of them had any idea what the future would really hold, or what additional challenges that would lay ahead. These were sweet times for them and their days were filled with joy and laughter. Lucy would say as much using the following words, “Without wishing the time again we often spoke about what they would be like as they grew older. Three brothers and a little sister. We laughed wondering if Amelia would love or hate having her brothers looking out for her, making sure no boys could get near.” With only a couple of exceptions, the families whose stories I have shared had no idea that a wretched disease such as Battens even existed. Without any warning, life at the Carroll residence would soon change forever. What one would normally expect, was not to be. Lucy conveyed that truth with the following words, “Little did we know that the future which we dreamed of would never be.....”
Mike and Lucy had no idea what type of a prince was in their midst but there was something truly special with this little man they named Ollie. The bond between him and his family was instantaneous and special. Gosh, he was cute. A future heart throb for the girls and a current one for his family. While things seemed like they couldn’t get any better, they in fact had. The entire family was elated with the appearance of a princess into the household. Although she gave everyone quite a scare, she had arrived into their midst and she was so completely perfect. From the time that Amelia arrived, all were instantly in love with her. This was for good reason and one that could clearly be seen. From the moment she began to smile, her smile became infectious. They thrived as a family and life was so good. The first eighteen months had passed since Mike and Lucy’s family was completed and the future looked so bright. Mike was working hard and was in the process of building his business. The same tenacity and work ethic that had made him great on the football field also made him great at work and at being his family’s provider. Lucy had finished her education and she was poised to one day return to work. For now, the house was so busy with four children happily involved in all their activities. The king of which was football. The sounds of footballs being kicked were sometimes followed by things breaking as the sport was practiced inside as well as outdoors.
Somehow, mum and dad didn’t always mind as much as one might expect. After all, the kids were doing something that was loved by all. You couldn’t walk very far without tripping over a toy or two. Kids have to have toys you know! There was laughter. Plenty of laughter and fun. No doubt, there were outings together to places that included grand mum’s house. Accompanied with all of this were thoughts of what the future would hold for all four of their children. Sporting and school events. Summer and winter vacations together. Perhaps Ballet recitals and other sweet things for the princess in the house. Graduations and successful careers. Weddings and a sprawling family as the size increased with grandkids. The list goes on.
It is too often that things don’t go as planned or as one might think they should. Troubles come our way. Things we would never expect to happen do happen and that sometimes brings devastation.That is the way it is with Batten Disease. Life already has it’s share of difficulties and we deal with them as they come to us. A rare disease such as Battens brings with it concerns that are on an entirely different level. Mike and Lucy had no idea how different of a course their lives as parents would take. Almost all at once they found themselves being part of a community, worldwide, that they didn’t even know existed. This part of their story will not only explain what would happen but also, how they would handle the unforeseen. Things would change forever as problems began to develop with their prince they named Ollie. Lucy stated that it was around the age of three that they noticed some things in Ollie that caused concern. One thing was that he had some delay in the development of his speech. This had occurred in Ollie’s older brother Micky as well, however, Micky had caught up with the other kids when he started school. When they mentioned Ollie’s delayed speech to health professionals they felt that he would catch up just like his older brother did. While there, they also mentioned the fact that Ollie was a bit clumsy but as you might guess, the doctors felt that Ollie was just being a boy. Ollie was attending preschool at the time and he just loved it. He was hitting all of his milestones, with the exception of the delayed speech and potty training had been no problem. Mike and Lucy must have been relieved by the fact that the doctors felt everything was just fine. That was until the month of September 2014. Ollie had his first seizure.
The day had been very normal and Ollie had attended his preschool. He had done well that day and he was happy when he was picked up. As they had returned home, Lucy had noticed that Ollie felt warm and he had a temperature when checked. Her concern for him was great enough that she brought him to get checked out by medical professionals. It was found that Ollie had an ear infection and so antibiotics were prescribed as the family was sent on their way. Ollie returned to running around with his brothers after receiving a dose of the medication and all seemed to be fine again. It was later that night, while bathing, that trouble would strike. It was then that Ollie began to have a seizure. Lucy stated that it was the most terrifying thing that they had ever witnessed. Ollie actually slid under the water while seizing. Fortunately, Lucy was close by and screamed for Mike to come quickly as she pulled Ollie out of the water. Mike flew into the room as Ollie continued to seize. Lucy said that it was as if time had stood still while all of this was happening and who could argue with that. Mike continued to care for Ollie as Lucy called an ambulance. The seizing stopped in a few moments as they waited, but as it did, Ollie stopped breathing. What must have been part of Mike’s training as a former lifeguard kicked in and he started to perform CPR on his very own son. That is amazing calm in the midst of chaos.
Lucy said that flashbacks from that day still haunt them. She went on to describe to me what she had seen happen with Danny and Micky as all of this was happening, “I can remember looking up from Ollie, who was laying on the floor, into the eyes of Danny and Micky. They stood in the doorway watching and pure fear filled their young eyes. But even so, they knew what to do as they picked up Amelia who was still a baby. They flew out of the door to our friends next door.” By Mike’s quick actions, Ollie began to breathe again. Of course, Ollie would get checked out by doctors who came to the conclusion that he had experienced what is called a febrile convulsion or seizure. This is a type of seizure that is associated with an elevated temperature. Mike and Lucy were assured that these are common in children and that 9 out of 10 times, they are never repeated. Ollie was discharged from the hospital the next day, much to the families relief. Their little Olliebobs was okay! It was, however, only hours after returning home that Ollie would have another seizure. According to Lucy, they were told by the hospital that it was a convulsion related to Ollie’s infection. That, though, was not to be the case. These seizures were not isolated but rather would become part of a larger problem. Over the next few weeks, Ollie began to have more and more seizures.
It is only fair in considering that Batten Disease is rare, that it may not be diagnosed quickly in all cases. It should, however, be known of in every place that medical science has it’s reach. Mike and Lucy were devastated with the diagnosis of Generalized Epilepsy. Almost all at once, the plans that they had made were interrupted. At least as they applied to Ollie. Questions arose. Would he be able to drive a car or even function normally as he got older. They were at this point, optimistic overall and felt that Ollie’s condition could be handled through medication. It would control the seizures and he could lead a close to normal life. It should come as no surprise that Ollie was referred to a neurologist because of the seizures. Lots of questions were asked about Ollie’s development and it was at that point that Mike and Lucy brought up Ollie’s issues with his speech and his clumsiness. Obviously this doctor knew the questions that needed to be asked. As a result of the information that she gathered from Mike and Lucy, it was decided that more testing needed to be performed. A lot of testing was performed. This included EEGs, CT scans, and MRI scans. Lucy said that it was as a result of the MRI performed that they learned Ollie’s cerebellum was smaller than it should be for a child his age. This is commonly seen in children that suffer from Batten Disease. I don’t even think they knew the disease existed at this point. Lucy stated that it is this part of the brain that controls areas of development such as balance. This was the cause of Ollie’s frequent falls. It was at this point that it really started to appear that there was something going on besides regular Epilepsy. Mike and Lucy were really starting to worry, and for good reason. The doctors wanted more testing performed. Lucy would tell me that Ollie was tested for a group of conditions through blood testing. Mike and Lucy did a Google search with each one that they learned about, checking Ollie’s symptoms against what they learned. They crossed each one off as Ollie’s symptoms didn’t match. Within a few weeks, they received a call asking them to bring Ollie in for a consultation a couple of days from then. An appointment would be made for the middle of February, 2015.
The Day Not Forgotten
Lucy said that she felt relieved at that time, thinking that it couldn’t be bad news coming. This, she felt because they wanted them to bring Ollie in with them. It was, however, as soon as they arrived that they felt something to be very wrong. This because the appointments room was completely empty. This gave them a sinking feeling as that part of the hospital is never empty! It was now though, with the exception of the staff. Lucy said that they had never been to this particular part of the hospital before and she had made note of the appearance of it. It was very white and clean looking. She felt that the area had a funny feeling about it. Like a feeling of sadness. As they entered the doctors room, they were greeted by a number of health professionals and they would know what they were facing in a matter of minutes. Lucy described the entire seen with the following words, “The date the 13th of February 2015. A day that will stay with us forever. I can remember the color of the walls, even the smell. As we sat in that small room with Ollie on his daddy’s knee we were told that our child has Battens Disease, that there is no cure and that life expectancy is between six and twelve years. Ollie was just four years old! Our world fell apart in that moment. We were told Battens Disease was so rare that they had never come across a child with it before.” Everytime that I have done one of these stories, a dramatic picture is painted by the words given to me by the parents. This, because it is so very difficult for anyone to receive this kind of news. It doesn’t matter how strong of a person you are because no news could be more difficult than this to receive. Lucy’s own words paint the scene perfectly, “Our little boy was dying! I remember looking across at Ollie in disbelief, watching him looking up at his daddy. Smiling, wiping his father's tears away. We asked the doctors where else there was treatment. There had to be something, somewhere in the world. We were told there was none.”
Mike and Lucy were given information about Batten Disease. Then, they were told to take their son home and and enjoy him for as long as they could. They were sent on their way, that is all that there was to it. Lucy stated that the next few days were a mix of pain, sadness, disbelief, and anger. They kept reading the symptoms and felt that Ollie’s symptoms did not match up with them. They began to research the disease, thinking that they couldn’t give up on their son. Mike and Lucy felt that they had been let down by the doctors. As they worked through their grief, they pressed on in search for help with Ollie. Through their search, they found BDFA (Batten Disease Family Association) and reached out to them. They also reached out to families in the United States that were already dealing with the disease. The first person that Lucy had made contact with had a beautiful daughter that also had CLN2 Battens. Her remarks about that initial conversation are worth noting, “That conversation will never leave me. Through this father’s own pain he somehow found the strength to support us. This is something we will forever be grateful for.” This is one of the things that I have observed to be so wonderful concerning the Batten community. That would be the amount of support that these parents give to one another. It is truly something special. Only they can know what they as Batten parents are feeling.
It was a few weeks after Ollie’s diagnosis that Lucy started a Facebook page for Ollie. She had started the page initially to keep family and friends informed about Ollie and his struggle. As a family, Mike and Lucy had no idea, at the time, what kind of impact they would have on the Batten community there in the UK and elsewhere through Ollie’s Army. For that matter, they had no idea how their own lives, and the journey they would take as a family, would be impacted by the other families they would meet. What started as only a way to keep family informed would eventually become so much more. The awareness that would be raised and the people that they would meet is very worth mentioning. The help that they would seek for their own children would also be a help to others with Batten Disease. Ollie’s own need for help would impact other people’s lives. This would all happen as Ollie’s journey continued. Eventually, through their own search, Mike and Lucy found a specialist in London who they thought could help. They made an appointment to get in as early as possible. Lucy said that the doctor could not believe her eyes after seeing Ollie for the first time. This because, at that time, she had never met a child with Batten Disease that was as well as Ollie was. She was used to seeing children that are farther along in the disease by the time they are diagnosed.
Batten Disease is considered to be rare. While there, they would learn that Battens was transferred genetically. Therefore, their other three children had a 50/50 chance of also having it. Mike and Lucy decided to have all three of Ollie’s siblings tested as early as possible. Already dealing with heartache of what had befallen the couple’s darling Ollie, they would be given disheartening news. They were relieved to know that neither Danny nor Micky had the disease. It was, however, revealed that little Amelia also had CLN2 Battens and would one day start showing symptoms. Their princess! The one that they had been overjoyed to receive. She had made her own dramatic entrance into the world and she was just getting started with a new challenge for this family. Lucy described what it was like immediately after receiving the news from the medical professionals, “For the second time our world fell apart as we learnt our beautiful princess also had Batten Disease. Amelia had only just turned two, she had been hitting all her milestones, to look at her you would never know. Walking out to our boys in the waiting room, trying to hold it together and act normal has to be one of the hardest things we have ever had to do.”
That was on the 30th of March, weeks after Ollie’s diagnoses. They received the news that their princess also had Batten Disease. Lucy further described the mood within the house as they returned home to digest what they had just heard. “For days all we did is cry. I could not stop being sick due to shock whereas Mike locked himself away from everyone.” This went on for a few days and then Lucy said that they pulled themselves together. I have read similar things from other parents. The shock and devastation eventually give way to determination. This, even though the heartache remains constant. In her own words, “.....there was no way we were going to let this horrific disease take our children without a fight.” So this all raises a couple of questions. How do you handle adversity such as this? What do you do when two of your children, or even just one, is diagnosed with a horrific disease that you didn’t even know existed. Everyone handles things differently. I would think that most every parent is determined to provide the best possible care and also to fight off this monster of a disease as best they can. Some do so quietly as a family and that is perfectly fine. Others share their child’s journey on social media. They want moral and other kinds of support from outside They want people to know who their child is and what the journey is like. They don’t want their kids to be forgotten! Still, others know the importance of spreading awareness about this disease. Much progress has been made but this is no time to quit. The difference between knowing and not knowing is profound. Especially as it relates to the medical community. People in public office need to be aware, as well as, the general public. And then, there are others that take up a leadership role within the community. They do things, not only for their own child’s benefit but also for the benefit of others. This may come from taking advantage of opportunities that present themselves. It can also come from intentionally seeking to take an active role. I believe that almost all of the above applies for Mike and Lucy. They have become very public in their battle against Batten Disease and it has benefited others as well as their own family.
It all began as they searched for help with Ollie and Amelia. Lucy said that they had found a clinical trial that involves Gene Replacement Therapy. Both Ollie and Amelia were accepted, but just as they were, Mike and Lucy learned of another trial that was being done. This one was taking place at the Great Ormand Street Hospital (GOSH) in London. The couple researched the trial and found out that it involves replacing the enzyme that was missing in Ollie and Amelia’s brain. The program was creating incredible results. The only problem was that the trial was closed. Ollie and Amelia met all the criteria for acceptance but the trial was simply closed. Pleading with the doctors was of no use as they were powerless to help. How absolutely frustrating. Grieving over the recent news that two of their children were terminal. Knowing that there was something that could extend their little lives with the hope that a cure would be found. And yet, entrance into the trial was closed. That is when Mike and Lucy reached out to the Batten Disease Family Association (BDFA). With the help of BDFA, they worked towards convincing the pharmaceutical company (BioMarine USA) to grant Ollie and Amelia access to the trial on the basis of compassionate use. Lucy said that it took months and months of midnight calls to America, emails back and forth, bringing health professionals on board. Finally, with a lot of determined effort they were able to organize a meeting with the company and it would be held in Paris. They traveled there, along with representatives from BDFA, to meet with company representatives and others from around the world. The result of this meeting is that the company opened up five places at each trial centre across the planet. That, my friends, is significant and a product of great leadership. It also comes from parents that want the best for their children and will stop at nothing to get results. Lucy put into words their feelings of gratitude towards those that made this all possible, “We cried upon receiving this news. The BDFA and health professionals worked tirelessly to enable this to happen and we will never be able to thank them enough for taking on our pleas for help and support for our two children.”
Making Their Case
Even with this decision, the company still had to be convinced that Ollie and Amelia met all of their criteria for the trial. Finally, after many assessments and sleepless nights, both of their darling children were excepted and the process was begun. Lucy stated that her and Mike were so thankful that both of their children were given a lifeline of hope. They also felt uplifted, knowing that their efforts had helped in giving this opportunity to other children across the globe. Ollie had brain surgery in November of 2016 to have a port inserted into his brain. This, so that he could receive the chemical that replaces the missing enzyme. Amelia would join her big brother at GOSH in February of 2017. The infusions take four hours and the family travels from Manchester to London every two weeks. This, obviously, takes a strong commitment as they juggle everything that life throws their way. The results are so worth it though. Lucy stated that they would have traveled to the other side of the world for their kids to receive this treatment. Both Ollie and Amelia are responding well to it. Sadly, Ollie had progressed further into the disease as they worked on getting their children accepted. He could no longer walk unaided by the time the he started the therapy and he was only able to say a few single words. There is no doubt that the enzyme replacement has had a major impact on increasing Ollie’s longevity and general health. The treatment has stabilized the disease in him. He no longer experiences the pain that he was having and his seizures are well controlled. He has only had one seizure in the last 16 months compared to the hundreds he experienced before he began the therapy. Ollie goes to school and enjoys swimming with his daddy. He is a doll of a young man and a genuine prince!
It needs to be noted that what you see with Ollie and Amelia is a contrast between early diagnosis and treatment, and having to wait. Amelia is thriving on the treatment because her Battens was discovered so early and the therapy was started right away. She, in fact, is one of the youngest children to be receiving the the treatment. She started the treatment so early that the only sign of the disease was a single seizure and that was attributed to sickness. Lucy describes the exceptional quality of Amelia’s life. This even though she has Battens, “As far as we are aware Amelia is the only child in the world who should have symptoms of Batten Disease but doesn't. Instead she is thriving, she goes to mainstream school, where she plays and interacts with her friends, she enjoys mark making and phonic lessons. Amelia can learn new information and retain it. She can run, dance, Juno and sing. These are all abilities which she should have lost a long time ago.” Lucy goes on to say that Amelia is learning to count, write her name, and ride a bike. Just like any other child. Mike and Lucy were extremely happy in what they were seeing in both of their Batten children. The enzyme replacement therapy had produced positive results in both of them and so they were excited by the news that the drug being used was approved by both the FDA and the EMA. In Lucy’s own words, they were “over the moon.” Once this happened, however, a new fight would loom on the horizon.
Mike and Lucy would remain involved and Ollie’s Army would continue to become more than a name. As mentioned before, the Facebook page named after Ollie was originally set up to keep family and friends informed but it quickly became much more. Major awareness was created through Ollie’s Army and some of that came with the help of some well known celebrities. I bet that, like the rest of us, they were taken by the appearance of these two attractive children and their family. Fundraising events have been held in the local community and the results are absolutely amazing to me. While a lot of the funds raised have gone towards Ollie and Amelia’s needs, a lot has been done for the fight against Battens in general. A big example happened recently. Ollie’s Army was able to raise and donate £30,000 to help in the research of therapy for the eyesight of children with CLN2 Batten Disease. In case you are curious, I did the conversion and that amount is over forty-two thousand in US dollars. This family is aware of the fact that this research comes too late for Ollie. However, it could help Amelia. They have also done this in the hopes that it will help others in the future. That is so commendable! Fundraising for their children has helped fund equipment and adaptive changes that were made to their home. Some of the funds have helped with the expenses related to the treatment and also help with making precious memories. They have also used funds to help support BDFA in their efforts as well.
An Army Like None Other
There are so many very kind people that have helped in their effort through donations and the giving of their time. One example is the help that they received with the building of an extension to there home for Ollie. Mike was able to receive the help of others in the construction and it became a real community project. This included the installation of a lift and a hoist for Ollie. Lucy describe the feelings of gratitude that she had at the time, “It was an extremely emotional time adding all this equipment to our home that we needed but did not want to accept. This was made easier by the people around us supporting us every step of the way. We even had the children from our street coming to help it was so heartwarming.”
Ollie’s Army holds a Golf Day and Ball each year and it takes an incredible amount of help from others. Their are some really incredible ladies that do this even while working full-time jobs. There is also a Family Fun Day held each year. The event which, includes a football tournament, hosted over a thousand people this last year. This included a few famous faces. Lucy said that all of this would not be possible without the help of their fantastic friends who give of their time. A network of amazing people has entered the lives of the Carroll family. This all, no doubt, makes something that would be almost unbearable, a lot better. Lucy would also tell me that people that were complete strangers to them have reached out to their family, wanting to help with Ollie’s Army. She said that these people have no idea how much their kindness means to Mike, Lucy, and their kids. All of this has helped them get through some very difficult times. The beautiful thing is that as this family is helped, they help others in the process through their own actions. Lucy summarizes the entire experience in her own words, “Ollie's Army was created to raise awareness of this horrific, rare disease. We have met so many incredible people throughout our journey. It's made us appreciate life and helped us to understand that there are so many people having to battle battles everyday.”
There are some notable people that this family has met along the way. Now, I have referred to Mike, Lucy, and their kids as my royal family and they will always be that. (They are every bit as attractive of a couple as those that have belonged to the British Monarchy). As a family, they have been in the presence of royalty. That would be so by being in the presence of Prince Harry. I know that for them, he turned out to be a really neat guy. According to Lucy, Prince Harry first met Ollie at something called the Wellchild awards. You see, Ollie had been nominated for an award as being the most inspirational child. Well, go figure. He won! What happened there was so sweet. Lucy described the seen, “At the award ceremony Ollie met Prince Harry. As Prince Harry was knelt down speaking to Ollie, Ollie who could no longer walk or stand unaided used all of his strength to stand and hug Prince Harry. It was a magical moment which hit the headlines across the world.” That is amazing Ollie! It would be six months later that Prince Harry would stop in at GOSH to see Ollie and Amelia. What a wonderful thing to do. I think that I am a fan of Prince Harry now. From an ocean and a continent away!
Ollie’s parents had been fans of Ed Sheeran, the musical entertainer, for some time. They passed on their love for his singing ability to Ollie. Ollie loves Ed’s music and he would sing along to his songs. That is until he lost his ability to do so. I know that Ollie’s face still beams with a huge smile when he hears Ed’s music. Ed is not only a gifted musician and singer, but also a great entertainer and his music has seen Ollie through some very difficult times. Ollie’s love for Ed’s music was revealed to Ed through a social media campaign set up by Lucy’s sister Emily. This got Ed’s attention and the entire family was invited backstage to meet Ed while he was performing a concert in Manchester. I can only imagine what a treat that had to have been for the entire family but especially for Ollie. I bet that Ed had really endeared himself to Mike and Lucy for having done this for them. I am also thinking that meeting this family was really meaningful to Ed and I bet he was inspired to be even more of a humanitarian. What a truly neat experience for all involved.
Mike and Lucy recently had the opportunity to appear on the largest morning show in the UK, which is called This Morning. While there for the appearance, they had the rare opportunity to meet the Prime Minister of the United kingdom. Theresa May was also appearing on the show that day and it gave the couple the opportunity to speak with her. They shared with her about the disease that confronted their children and the treatment that they were receiving. Mike and Lucy really appreciated the time that they were given with the Prime Minister. Oh, and why was the couple invited onto the show? That was to discuss the impact of the recent decision by NICE (The National Institute for Health and Care Excellence) to not recommend funding by the National Health Service (NHS) for the treatment that Ollie and Amelia are receiving. This doesn’t only affect them, but also the others that are receiving the treatment. This is the battle I referred to that was looming and it also affects children who are waiting to start the therapy but can’t because of the decision.
A Life Unexpected
Mike and Lucy’s days are busy. There are all of the normal responsibilities that come along with having a family. Mike’s work as a builder and Lucy’s work at home. There are two big brothers in Danny and Micky that are involved in all the normal activities. This includes school and football of course! They have to be the best big brothers because they have two younger siblings that require a lot of attention. There is also a princess in the house and a princess always requires a lot of attention. Especially when yours is a Batten Princess that is undergoing Enzyme Replacement Therapy. Her little self goes to school and does all the “normal” things because the therapy is working! They also have a very handsome young prince at their house. There is a very special bond between him and his family and their world revolves around him. That is because it has to. He is a Batten Warrior and he needs help as he fights. He is a royal rockstar! There are appointments to keep and that is not to mention a trip to London every two weeks. There is always messages and emails to answer. Planning of events and daily entries in Ollie’s Facebook page. Awareness, awareness, awareness! The list goes on and on. Oh, and maybe there is a certain blogger that needs more info to include in his next story. Even with all of this going on, they remain in the lead alongside BDFA in trying to make sure that that Enzyme Replacement Therapy remains funded.
I had stated at the beginning that I had written a short blog about the Carrol family when I had first started writing. The following quotes what was written by me in my first blog about this family. It was named “My Kind of Royalty” and the words that I had written still stand true. I know so much more about Ollie and Amelia’s journey, and Batten Disease for that matter, than when I first started. The more that I know and observe about this family, the more impressed I am. They have remained accessible to me even with everything that they have going on. Here is what I stated at that time,
“And now let me tell you about an entire family that has become royalty to me. There have been several famous couples that have been showcased by the Royal Family over the years. In my humble opinion there are none that have anything appearance wise on the couple that is Mike Carroll and Lucy Faith. They are both very attractive people. When an attractive couple decides to have a family that usually means that their children will be attractive as well. It is easy to see that is in fact the case. Ollie and Amelia and their other two boys are all very nice looking indeed. Adorable is more the word that I think of when looking at all the pics. Prince Ollie and Princess Amelia are among the many children that have become the face of Batten Disease.”
Here is more of what I had say at that time, “I can only imagine that Mike and Lucy would prefer that this guy from Oregon USA didn't even know who they are. Like any other couple, they just wanted to be a regular family. Raising their children in the safety of their home. Sharing in the experience of seeing each child grow and develop into adulthood. They just looked forward to seeing each one achieve success individually as they grow together in the bond of family and tradition.”
Isn’t that what everybody wants in a family? Things do not always go the way we want though. What do you do when problems arise? How do you respond? I believe that this couple, this family, is a shining example of how to handle adversity. I know that they would give anything to have all four of their children healthy and whole. Mike and Lucy would probably prefer that they didn’t know what Batten Disease is on such a personal level. However, in the face of adversity, they are giving this their all. Aiding in awareness, funding, and research as they battle Batten Disease. Maximum effort with real class! There are so many others in the Batten community that I also have a profound amount of respect for. Yes, it is a tragedy anytime that someone is told that their child has a disease for which there is no cure. However, the details of the undying love and tender care that take place are without equal in beauty. This family will forever be royal to me because of all they have done in the battle against Battens. It is also true that within their home resides a prince and a princess. What once was my conclusion by appearances, is now very evident through fact. Forever Royal - The Final version.
Blogger and Advocate
This blog article was originally done in two parts back in 2018. I learn new things as I continue to write these stories and I decided that it was best to make Forever Royal a one piece story with subtitles. In doing so, I have taken out things that I considered to be just fillers (Me stuff) and have made it all about Ollie and Amelia, as well as, their entire family. That is the way that it should be. Right?
The Carroll family is amazing to me. They have done everything in their power to bring about change and greater awareness when it comes to CLN2 Batten Disease. They play a big part in the fight to get Enzyme Replacement Therapy approved and funded by the National Health Service (NHS) in the UK. I wish them, and all others, in this battle the greatest success. It is this writers opinion that reversing the decision to NOT fund the treatment for children with CLN2 is the right thing to do.
“As the seizures were occuring back then, I did not know what to think. I had never seen a seizure before Raelynn started having them, so I was honestly terrified. I was very concerned because I did not know why this was happening.”
Why these families and what is it that makes them so special? I have talked about this at length on several occasions. To be told that your child has a fatal disease is without question, the most devastating news that a parent can receive. That is what each family faces when they are told that their child has Batten Disease. The way that devastation and grief gives way to determination is almost always a central theme in these stories. Going from complete despair to having the will to help these kids fight a battle is always worth talking about. Ordinary people that have been asked to do something that is extraordinary. Have I worn that phrase out yet? Those of us that are on the outside looking into the Batten community know that it conveys the truth. This writer realizes that there are several thousand rare diseases that affect children. I believe, however, that the families that battle Battens represent well all families affected by these diseases.
I truly believe that what Batten families go through and the way that they handle the journey is remarkable. I however, never want to make it seem that I am trying to glorify the experience. I know that it is truly heartbreaking, but when I read the details of undying love and total devotion to these children, it makes me want to share these stories with others. Never, have I meant to make the Batten journey sound like something that should be sought after or something that is wonderful to experience. The journey that is Batten Disease does carry with it a right of passage. That makes those who take it part of a special group. Only they can truly understand what it is like to experience such a thing. Then, there are the children. These kids do something to me. The things that they teach us about what is important in life, while being unaware that they are doing so. Well, I can’t even find the words. The way that they remain happy during the most difficult of circumstance is just amazing to me. The way they fight with everything that they have and the way that they tug at our hearts while they do so.
I always appreciate it when I get comments from those who are connected to the Batten community in one way or another. This time, I received a comment from my long distance friend Joan Avery. She is a very special Batten granny who has a granddaughter named Montanna. Montanna battles Juvenile Batten Disease and Joan contributed to the story that was done about Montanna. It was titled Sweet Montanna and The Status. Montanna is another beautiful young lady that is in the middle of the battle and her and Joan are, of course, very close to one another. Joan shared what she sees in Batten children in a concise but insightful manner with the following, “I haven't seen one single Batten face that I did not consider beautiful! These kiddos and teenagers are a reminder of the beauty, love, and desires that this disease has tried to steal from them. They are some of the most precious humans I know. They want nothing more than to be seen and recognized for the person they are. I love every single one of them!”
Joan speaks out of her own experience as Montanna’s grandmother and I would want to echo her words. This, by stating that I would like these kids to be seen and recognized for the special people that they are. That is the biggest reason that this blog exists. These kids are the most amazing and they change people’s lives. Yes, there is much sadness involved but the effect that these young warriors, and their families, have on the rest of us is without question genuine. The families will tell you that they are just doing what needs to be done but the rest of us may see things differently. Those of us on the outside see what they do as extraordinary. Thus, the meaning behind my little phrase that I like to wear out. To work past the grief and to set out to take each day, one at a time. That is something that people like me greatly admire about Batten caregivers. And again, there are these children and young adults that I consider to be the most special. Joan is right. Batten Disease will try to take away everything that makes them who they are. In the process they show us a heroic kind of effort that is seen in warriors that are unaware. They battle SO sweetly and this writer is totally stuck on them. One such warrior is someone like little Raelynn. She’s yet another one that will steal your heart, never to give it back. This story belongs to her and also to her mom. The name of Raelynn’s mommy is Morgan Myers and their life together makes up another very sweet story. This is how that story begins.
Her Little Story Begins
Just as it would be for most young women, Morgan dreamed of having a family. She had a man in her life that she cared for deeply and she wanted to spend her life with him. This life would include children and she was so pleased to find out that she was expecting her first child. Her pregnancy would go smoothly, with no real complications. In addition to that she was told that she was going to have a little girl. Morgan would have a princess in her house and for this reason, she was more than excited. As June of the year 2013 approached, so would the time that Morgan would give birth to her baby girl. This precious bundle would not make her entrance into world with ease. Morgan would end up being in labor for 34 hours. Tried as she might, she would not dilate to the point that her baby would come to her in the natural way. As a result, her princess would be delivered by Cesarean section. Little Raelynn Faith, as she would be named, would make her entrance in the life of Morgan on June the 1st of 2013 at 5:30 in the evening. Raelynn was flawless. She had all of her fingers and toes and she was covered in brand new baby skin. She was perfect and perfectly beautiful. Just look at her!
Right there by Morgan’s side for the big event was her mother Rhonda and her best friend Kylie. Raelynn was born at Meritus Medical Center in Hagerstown, Maryland. She was born at the healthy weight of seven pounds and ten ounces. Seeing her little girl for the first time was unlike anything that Morgan had ever experienced. She felt nothing but pure joy as she held Raelynn for the very first time and that joy was shared by her mom and best friend. Morgan shared that the experience also left her feeling a bit overwhelmed. This, as she sat there, looking at Raelynn’s adorable face. She was thinking about the responsibility of being a new mom, and that, at such a young age.
Morgan would, in fact, find parenting to be a challenge. Just as any first time parent would. She, however, would encounter challenges that are not seen by many. There would be a set of rare circumstances surrounding little Raelynn that no one could have seen coming. There was no way to know as you looked at this most perfect little creation. All seemed to be fine at the time that she was brought home. Raelynn continued to grow and amaze people as she did. She quickly became Morgan’s focus and the center of her attention. Raelynn brought so much joy into Morgan’s life and who could not understand how that would take place. Watching children as they grow is an experience that is never forgotten. All of the cute and priceless things that kids do as they are growing never leave our memories. They provide memories that are priceless. These are some of the things that we look forward to and they are the things that we never forget. Raelynn’s early development was right on track! She was reaching her little milestones on time and that made Morgan so happy as she looked on. Morgan said that Raelynn would learn to walk at age ten months and she was saying so many words early on. She was just so adorable to look at and Morgan was pleased with what she was seeing.
As Raelynn was approaching age two, Morgan noticed that her speech was a little bit delayed. She wasn’t picking up on the gift of gab like other children her age. This can sometimes be the case and children most often catch up with their peers later on. Everything else was right on track and so Morgan wasn’t too concerned at the time. Things would change in Morgan’s thinking as Raelynn turned three years old. Her speech was not catching up to others her age and it was becoming more of a concern. Could this have been something that was a precursor to a larger problem? Was it a symptom of something yet to come? At the time, Morgan was thinking that it was something like Autism developing in Raelynn. However, it would be soon that other things would start to happen. Things that would concern any parent and things that would lead any parent to search for answers. It was October of 2016 that Raelynn had her first seizure.
Raelynn had come down with a stomach virus and had been taken to the emergency room at the hospital. That is when the seizure occurred. At the time, Morgan had attributed the seizure to a high fever or perhaps to the Zofran, which was the prescription that Raelynn had been given for her upset stomach. I know from doing other stories that this would have been the first thought of most any physician concerning Raelynn after the first seizure. I wish that this could have been the case, but it was not. Raelynn had another seizure after only a few days. She then continued to have them about once every month or every few weeks. This, of course, was alarming to Morgan and all of those who were close to her and Raelynn. Morgan had never witnessed a seizure before they started to occur in Raelynn.
Much of the support that Morgan would receive would come from her mom. As for Raelynn’s father, he was nowhere to be found. This because, according to Morgan, he was scared off by the fact that Raelynn was having seizures. I don’t want to digress here, but I had some thoughts about how people respond in a time of crisis and what makes a good parent. What really comes to mind is some of what I have become aware of since the time that I started doing stories about families that battle Batten Disease. There are certainly many amazing moms out there. I have often said that there is no love like a mother’s love for her child. It is, however, true that there are some really amazing dads out there as well. I am privileged to know of some that exist inside the Batten community. What I have found to be so very special is the men that have stayed by a women’s side even when they have other options. By that, I mean men that are “all in” concerning a relationship with a women even if it includes a child who has something like a seizure disorder. This is especially true when it includes the diagnosis of a fatal disease. These are the kind of men whose actions are, in my mind, heroic as they can be counted on when difficulties arise. For them, a girlfriend’s children are not just a necessary inconvenience. These kids are ones that should be loved and cared for in addition to someone that you are in a relationship with. Men who exhibit this quality of character are the kind that I am thoroughly impressed with. Okay, let’s continue.
Morgan would, of course, seek the help of the medical community. There would be numerous visits to the hospital when Raelynn had a seizure. Finally, Morgan would seek the help of a pediatric Neurologist. She would find one for Raelynn at an outpatient clinic for Children’s National hospital. The clinic was located in Rockville, Maryland. Once this happened, a two year effort to control the seizures would take place. Two years! The early diagnosis was that Raelynn had epilepsy. Several medications were tried but none of them would bring about a successful result. Raelynn’s seizures continued with little to no control over them. Finally, Morgan felt that enough was enough. She wanted answers as to what was going on with her daughter. It wasn’t only the seizures that were alarming to Morgan. She was also seeing regression in Raelynn’s abilities. Her speech was worsening and she was becoming very clumsy. Raelynn was constantly falling down and this had resulted in her breaking her foot in the summer of 2016. Morgan felt overwhelmed by what she was seeing and she was gripped by fear. Here is how she would put it to me, “I was terrified that the seizures were hurting her brain and she would regress more. I wanted answers for my baby and all they kept giving us was more seizure meds.”
Raelynn’s seizures would have a profound impact on Morgan’s ability to lead a normal life. For example, her ability to hold down a job was affected greatly by Raelynn’s seizures. It seemed that she would get called away from work constantly as the seizures occurred. This would necessitate that she become a full-time stay at home mom. I can only imagine how difficult it would be to go to work, knowing that you had a child at home that was suffering from seizures. How would this affect your ability to concentrate? There is no doubt that Morgan’s social life was impacted as well. The priority would, of course, be with Raelynn. Morgan would begin to receive social security disability to help with Raelynn’s needs but I am sure that there were still financial challenges for her. Having her mom’s continued help was of the greatest importance and it was necessary that Morgan move back home. In fact, Rhonda requested that Morgan move back into her home so that she could assist with Raelynn. In Morgan’s own words Rhonda and Raelynn “are inseparable”. Who could not understand how that would be the case? Even though the seizures had placed a limit on Raelynn’s speech, she could still be heard saying the word “Nana” quite frequently. That is what she calls Morgan’s mom. Way to go Nana. I am sure that the bond that you share with Raelynn is quite special!
Morgan would need this support as the seizures continued to happen. She needed answers and was not getting what she wanted. The staff at the hospital in Hagerstown had to have seen the frustration that was mounting with Morgan. This, as they were at the hospital once again with Raelynn. The medications that the Neurologist had been giving her over the course of time were not working and local doctors could not figure out what was going on. More medications were being added and the dosages increased. All of this was to no avail. On this visit, they offered the option of having Raelynn evaluated at Children’s National hospital in Washington, DC. Morgan took advantage of the opportunity by choosing this option and they would be transported there, to DC, by ambulance. Morgan and Raelynn arrived a few hours after the initial appointment began. This was all taking place in February of 2018 and it would be much more than just another simple appointment. Morgan and Raelynn would be there for almost two weeks. There would be a number of tests that were performed and these would include several EEGs and MRIs. This neurology team was on top of things and they were very knowledgeable. Children’s National is ranked among the top five children’s hospitals in the United States and Morgan would soon get the answer that she sought. This, even if it was not one that a parent would want to receive.
The doctors would include genetic testing in their search for answers because they knew that potentially, something very serious was taking place with Raelynn. I can only imagine the level of concern that Morgan had for her little princess. It must have seemed like a very long time as she waited to hear something from the doctors. The wait would come to an end and Morgan received the initial results as told to her by the neurologist. Here is what she had to say about the doctors comments, “Finally a head neurologist came to our hospital room and told us the results of her MRI. He said that the results show " brain atrophy". I had no idea what this meant until he said it meant brain shrinkage. This is when I started to get very nervous. He said we would not get the genetics testing back for a month but he was very sure it was a type of Batten disease.” The doctor would know this because of the level of knowledge that was held at this hospital. This is the type of experience that was needed.
From Despair to Help to Hope
Morgan would return home that night with Raelynn and she did what most any parent would do upon her return home. She Googled the disease so that she could be informed about what it’s impact would be if that was what Raelynn had. Any parent that researches this disease is horrified by what they read. Batten Disease is fatal and, to date, there is no cure. I am sure that Morgan was gripped with fear and deep concern as she read the details about Batten Disease. Morgan would tell me that she prayed to God, hoping that her daughter did not have Battens. It must have been very difficult to wait a month for the results of the testing. This was perhaps, one of the longest months of Morgan’s life but the time would arrive. It was in March of 2018 that the results of the genetic testing would come in. They would be made available to Raelynn’s neurologist at the outpatient clinic in Rockville and that is where Morgan would learn about the findings. Her worst fear would be confirmed as she would be told that little Raelynn did, in fact, have Battens. The genetic testing revealed that she had the CLN2 variant of Late Infantile Batten Disease. Morgan’s response to the news was understandable. She was shaken in a way that was beyond any other that had been experienced. Morgan described her response with the following words, “One nurse held me while I fell to the floor crying for almost two hours. When I was told Raelynn had Batten disease my heart felt like it was no longer in my chest. I felt an overwhelming empty feeling in my chest. It was sincere heartbreak. I cried every day for Months.”
Like with most everyone, Morgan was previously unaware of the existence of Batten Disease. All of a sudden, she was beginning a journey with Raelynn and her close family. A journey that she knew nothing about. Could you imagine what it would be like to receive the news that your child has Batten Disease? All of a sudden, there is this feeling of isolation and, at first, you don’t know where to turn. Perhaps you were told about BDSRA by a medical professional, but maybe not. Then, it is just a matter of time that you discover the very community that you are now a part of. Once you do, you gain the realization that you are no longer alone. There are people out there that know exactly what you are thinking and also what your feelings are. They not only know that, but they know what you will go through and what the challenges are that you will face. People in the Batten community are able to support each other in a way that those of us on the outside can’t because of a shared experience and a common level of understanding. These are all of the things that Morgan would find as she took her first steps in her journey with beautiful Raelynn. What is most valued by a new Batten mommy is the other Batten mommas and who could not understand that? Morgan would tell us this much with the following comment, “The support from other Batten mommas is what keeps me going half of the time. When it comes to the Batten community, when Raelynn first got diagnosed, I did not know where to turn to for answers until I found the BDSRA moms page.” The first person that would reach out to Morgan on that page would be a lady named Jennifer Medley. Jennifer was a mom to a most handsome son named Jake and he had previously been diagnosed with the same variant of Batten Disease as Raelynn. Jake would lose his battle with Battens at the age of nine. That was in 2014, after a very difficult and valiant battle with the disease. Jennifer would be available to Morgan to answer all of her questions because she chose to be there for others who might need her help. Any person who has battled, alongside of their child, remains part of the Batten community for life. They have been through the experience and the experience that is gained is valued by those who find themselves in the midst of the battle.
Morgan would find many others along the way and she would begin to form relationships that will last a lifetime. Along with people inside the Batten community, relationships are formed with people in the research and medical community. Especially those who are part of the battle against Batten Disease. Morgan would continue to ask God why He would allow her most innocent little daughter to go through this disease but she would soon receive some encouraging news. This would come from within the medical community a few months after Raelynn’s diagnosis. This, while they were at her Neurology appointment. It was at that appointment that Morgan would learn about a form of therapy that involved replacing an enzyme that was missing in Raelynn’s brain. This missing enzyme was responsible for cleaning out wastes in the brain cells and that was the source of the problem. A drug named Brineura was available and this would give Morgan some relief with the hope that it would work for Raelynn. It was a few weeks later that Morgan would receive a call from a Pharmaceutical company named BioMarin. They wanted Morgan and Raelynn to be seen by Dr. Andrea Gropman at Children’s National. Doctor Gropman is the Division Chief of Neurodevelopmental Disabilities and Neurogenetics at that hospital in Washington, DC. They all met together and it was determined that little Raelynn was a match for Brineura. Real hope for helping Morgan’s sweet girl now existed. This would all continue to develop as a date for beginning the treatment was set up at Children’s National.
Raelynn had been diagnosed in March and there would be an opportunity for Morgan and Raelynn that would take place in July of 2018. This, before the treatment started. Thanks to the support that was given by Tracy Kirby of the Batten Disease Support and Research Association (BDSRA), they would both be able to attend their first Batten conference together. Anyone that attends one of these conferences will tell you that the first one is overwhelming. There is so much going on and so many people in attendance. It is sensory overload! More than anything, there are the children and teenagers that you see and meet while you are there. So many young warriors in one place. It just does something to you to witness it for the first time. Everyone has their own way of responding and Morgan describes her reactions as she walked in the door for the first time, “When I first arrived at the conference, I was very overwhelmed by seeing the different types of Batten Disease. My first instinct was to turn around and run out the door. Instead I immediately started crying. I tried to hold back my tears but they came flowing out.”
I have heard similar comments before and I can certainly understand after witnessing it for the first time last year. This, although I could not have experienced it with the depth of feeling that a new Batten parent would. This was Morgan’s first in person encounter with the community that she was now a part of. She continued to share her feelings with the following comment, “I have never cried so much in my life as when we were down there (in Nashville). Meeting all of those families was so good for me to cope with Raelynn being diagnosed. The hardest part for me was seeing families there without their children because they had passed away.” Morgan recalls that she was assigned to the McCorkles as her buddy family because their son Micah has the same variant of Batten Disease as Raelynn. Misty McCorkle was extremely nice to Morgan, giving her guidance in finding her way around. She also provided Morgan a shoulder to cry on during the family buddy meeting. Misty was, of course, very qualified for this assignment. Another person that was a huge help to Morgan while at the conference was Hollie Beish whose son is little Conner of the Fighting For Conner Facebook page. Handsome Conner has the same Variant (CLN2) as Raelynn and he had been receiving the therapy that Raelynn was soon to begin. Not only this, but he had been receiving it where Raelynn was going to be treated. That is at Children’s National hospital. The staff at Children’s National had actually been trained to treat Conner as Hollie had previously been taking Conner all the way to Ohio every two weeks for his treatments. Raelynn would soon be the third child to get treated in the DC area, and so in that way, Conner paved the way for Miss Raelynn! Both Raelynn and Conner would soon end up receiving their enzyme replacement treatments on the same day of the week, every two weeks.
Morgan made mention of one other family and that is the Riddle family. She told me that Miss Raelynn would meet little Tayla Riddle and she described the scene that sounds so adorable with the following, “Raelynn really hit it off with Tayla when they had first seen each other. They were both in their strollers and they were reaching out for each other. It was the cutest thing to me. Then, they started having their own little Batten conversation, yelling back and forth and squealing at each other. Later on that evening, they ended up getting in the hot tub together.” These families always carry with them the experience of attending their first conference. It is one that is never forgotten. Morgan would echo this sentiment with the following words, “It was a great experience and really helped me cope. It showed me that I was not alone in dealing with this scary disease. There are other moms that I can reach out to at any time.” And still, as would be expected, the entire experience was a bit overwhelming. That time with her Batten family will always be dear to her. She had to have felt the assurance that she was no longer alone in the struggle that she was facing with Raelynn.
The trip to the conference had been an experience that brought with it a mixture of feelings and still there was anticipation for what lay ahead. Morgan had no idea what would take place in her life at the time that she had held Raelynn in her arms at the time of her birth. So many things had changed. So many things that had taken place. All of this, beyond what any parent would have expected. Raelynn would begin receiving the enzyme replacement therapy on August the 23rd of 2018. With that event brought the hope that the Brineura would make a real difference in Raelynn’s battle with Batten Disease. She has now received over twenty treatments and I think that it is safe to say that the disease’ progression has been slowed down. Hopefully, Morgan will see some small gains as others sometime see in their children. Raelynn is so loved by all who know her and it is so easy to see why that would be the case. Her huge smile is infectious and Someone like Raelynn is the type that will melt you on the inside. I am sure that was the case for those who came in contact with her during her Make-A-Wish trip. Children should not have to fight this kind of a battle but it is nice to acknowledge them when they do!
Adventure and the Journey
When it came time to make a wish, Raelynn chose Disney World in Orlando, Florida. Morgan told me that this is because her little princess is a huge fan of the Disney Princesses. She is such a fan that dressing like a princess is what she chooses on Halloween. They would make their way to Florida and would be there from the 13th to the 19th of October in 2018. They had an amazing time with all of the expenses being paid and staying at Give Kids The World Village. Food and everything was taken care of. Toys were even provided for Raelynn. Make-A-Wish is an amazing foundation and I am so happy that they exist for kids like Raelynn. She visited the Animal Kingdom and loved going on Safari rides. There were many other rides that Morgan and Raelynn went on but her favorite one was the Little Mermaid. Raelynn was kept busy with lots of activities. She loved seeing all of the Disney characters and was even tucked in by a different one every night! I find that for them to go that length for Raelynn to be so very special. The Disney parade was magical to Raelynn. She was greeted with hugs and handshakes by many of the Disney characters as they passed by. Raelynn was invited to a princess tea party at a very fancy hotel at Disney and she was gifted with a princess doll that she still has. They also went to a pirate and princess pool party, but that is not all. In addition to time spent at Disney, Morgan and Raelynn also visited Universal Studios and SeaWorld. Wow! The last day was spent unwinding at the beach. Raelynn loves playing in sand and going in the water. Fortunately, there is an abundance of both of those in Florida. The entire experience was incredibly fun for both mom and daughter and it provided them with amazing memories that could never be forgotten.
Raelynn must have felt so special as she returned from the trip and that is in fact, how she should feel. She is such an amazing little person. That is easy to see, even from the opposite side of the country. This little princess was happy but she was failing to thrive as everyone would want. This was due to the fact that she was having issues with eating and keeping weight on her little self. Everyone agreed that a feeding tube was needed and having that done was the next event in Raelynn’s journey. She would undergo the procedure in January and I can remember Morgan’s concern about seeing her little girl having another surgery. Thankfully, Raelynn did very well with it. Morgan says that her princess has started to gain weight and she is much happier now. Who wouldn’t be? We all need our nutrition. Whatever Raelynn needs, Morgan will do her best to get it done for her little warrior. This because her love for her daughter has no conditions. It is unbridled and without limit. The love that exists between these young warriors and those who care for them is something that I also love to highlight. It is always the type of love that is undying and the bond that it creates is the most amazing. Morgan said that she would travel anywhere in the world for her daughter to receive the Brineura treatments. It would be impossible for Morgan to not love someone like Raelynn just that much! This kind of extreme sentiment is shared by most any parent that has a Batten warrior in their midst.
Raelynn has a younger sister who is almost one and a half years old. Her name is Aubree and as you might guess, her and Raelynn are very close. Morgan told me that both her girls have in common the same type of personality. Aubree is full of charm and her little self is very outgoing. She runs up to friends and neighbors when she is outside and gives them a very enthusiastic greeting. This is how Morgan put it to me, “She is no where near shy. If she’s sees people out, she runs up and yells hiiiiii. It’s the cutest.” The bond between Raelynn and Aubree was almost instantaneous and I know that it grows by the day. They have so many likes and things in common but one thing that they do not have in common is Batten Disease. That is a good thing. It will be wonderful for Raelynn to have Aubree by her side as she continues to battle.
It is hard to believe that Morgan is facing these challenges at such a young age. She is being asked to warrior on along with little Raelynn and she feels that Batten Disease has turned her whole life upside down. Kids in general change our lives in a dramatic way but the challenges that she faces are beyond anything that she could have expected. Everything is now about Raelynn and her needs. That is where a person’s focus should be when we are talking about someone like Raelynn. Mentally and emotionally, Morgan is being stretched. She sacrifices because she is not able to work and she has given up an active social life. Fortunately, her mom helps her with that as she watches the grandkids on occasion so that Morgan can get out with a friend or two. Morgan describes what her life is currently like by sharing the following, “My life is crazy now from going back and forth to doctors appts 24/7, to making sure all meds and feedings are on schedule. I feel like a nurse most of the time. Being a Batten mom is very overwhelming to me especially since I am only 25 years old. I had never dreamed of being a special needs parent.” And then there is little Aubree. She is adorable, is she not? Morgan says that she feels guilty because of the fact that Raelynn requires so much attention. She worries that Aubree will eventually feel left out. I just bet that Aubree will grow to understand and I know that she will continue to be the best little sister ever! Even with all of what is going on, Morgan would not change anything about her current situation. Here is more of what she told me, “I would not change being a stay at home mom for anything in the world though. I love that I get to stay home with Raelynn and spend lots of time with her and make memories.”
There are challenges that lay in wait as Raelynn continues to battle. We need a cure for CLN2 and all of the variants of Batten Disease. I am glad that the treatment is available for these kids as CLN2, Late Infantile, is one of the most common forms of Battens. Batten parents are quick to learn everything that they can about the disease and Morgan is aware of the course the disease will take. She knows that there will be heartache and she says as much with the following, “The challenges that she (Raelynn) faces are heartbreaking for me. My biggest fear is about when she will lose her eyesight. It breaks my heart that she will have to deal with all that this disease brings. I can honestly say that I am not ready for the even worse challenges she will have to deal with, but she will not face them alone.” No, Raelynn will not go through this alone and neither will Morgan. There is an entire community, In addition to her own family, that loves her and Raelynn. Morgan says that through all of that which has happened with Raelynn, her princess has remained happy. More times than not, that is what we see in these children and young people. They are so resilient and that is a big part of the charm that they posses. Is it them or is it us? It’s them! Raelynn is amazing. This is a little more of what Morgan had to say about her, “Her smile can light up a room and she is always laughing and making others laugh around her. She could make anyone fall in love with her.”
Morgan dreamed of having a family and a stable home life with a man that she loves. She said as much with the following words, “I had always dreamed that Raelynn's father and I would stay together and get married and end up having more children together. That's always been the dream. Find someone, get married and have babies. That dream still exists.” Morgan’s plans have been interrupted by Batten Disease although something tells me that this will still happen for her. It will just take the right kind of man. One who is worthy of her and one who loves her and her two daughters unconditionally. A man who is ready to step up and help as the journey continues. How could you not love someone like Raelynn? What is this experience doing for Morgan? There certainly will be future heartbreak but what else is there in life that she won’t be able to handle as a result of this experience. She will grow as a person. There could be great things in store for her. This, as her own experience impacts the lives of others. She will be special. In fact, she already is. She’s a Batten mommy!
These kids, and others that are like them, are just the most amazing. People need to know who they are and I have taken it upon myself to help in that cause. This is what I spend my time doing and making people aware has become the reason this blog exists. Raelynn is beautiful and I am grateful to have been given the opportunity to write about her and Morgan. Such a privilege. Thanks for taking the time to read about Morgan and Raelynn!
Blogger and Advocate
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017