“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.”
A young mum from England.
I may lose some people here but I would ask that you bare with me. I had these thoughts and although I was reluctant to share them in the context of Batten Disease, I felt that I would eventually have to get them into print. The phrase “A Beautiful Tragedy” came to me one day. It, of course, wasn’t a Greg Lopez original. 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 Battens.
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? 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. As an example, my friend Christina Bouraimi of Greece and her handsome son Theodore. He has Juvenile, or CLN3, Batten Disease. Together, they have demonstrated a Face to Face kind of love and their life together is a rare kind of fairy-tale. There are, of course, many other stories that are also beautiful.
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”. Those are often the kind of people that you want next to you in life. Those of you that have been through the Batten journey or who are facing it now, tell me that this hasn’t changed you. I know that it has!
Why Batten Disease? Why keep writing about it? I was, at one time, made aware and I have been passionate about the details of these stories ever since. You may ask, well what about all the other types of journeys that families take together? I really feel that families that battle Batten Disease represent all the other families quite well. Of course, there is a connection that I feel with this community. The Batten journey, and others that are like it, can be the most tragic. This, because it involves innocent children and young adults. 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 stir up my emotions. This because those details express the outpouring of love towards these young warriors in an unordinary way. It is also expresses the utter love and dependence by the young warrior upon the caregiver. The bond is absolutely like none other. It has to be the most heart wrenching experience when it is necessary to say goodbye. Only the love that was expressed through action remains along with a void that can never be filled completely. 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 and work for a cure. 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. I know that I am a bit naive, however this is the way this outsider views things. I hope that you will allow me this!
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 get involved and do things that not only benefit their own family, but also help others that are involved in the same fight. 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 CLN2 Battens. They are two of the most adorable little warriors that you will find. Ollie’s Army is a very familiar Facebook page and there is a website with the same name.
I first learned about Ollie’s Army from my friend Sandy. It was when I had first started approaching families about blogging about them that I was told about the Carroll family. I went to the Ollie’s Army page and took a look. I can’t remember what my first thought was but it was something like, “Oh wow, what an attractive family.” My thoughts included the fact that they were from England and I immediately started drawing a comparison between Mike and Lucy and the couples from the Royal Monarchy. I felt that those people had nothing on this attractive young couple appearance wise and so I decided that I would call the blog, My Kind Of Royalty. It was a cute and simple blog, and it was one of my first concerning Batten families. It was meant to point out the things that have status with me. I love professional sports and definitely, I love music. Politicians and other dignitaries, well, I guess I like some of them. These days, I have things other than politics and the news cycle to worry about. The things that are most relevant to me these days are performing tasks at work correctly and my work as an advocate for those who have Batten Disease. I am also a veteran and a long time supporter of our military. You’ll see this in my blog, in several places. Here are some of the things that I had to say in my first blog about the Carroll family concerning the things that are important to me,
“The people that really and truly get my attention are those who battle through hardship and adversity. They can be those who have put themselves in harms way like the members of the military have. Or, they can just be someone that has endured a difficult time in order to rise above their circumstances. These days, my focus has shifted to the little warriors and their families that battle through rare childhood diseases. These kids and their families have become some of my heroes! There are a few childhood diseases that have my attention but the one that has received most of it to this point is Batten Disease.”
My writing and activities on social media are born out of these sentiments. My work has grown out of those first stories of which Ollie and Amelia’s is among the most prominent. I felt that I needed to do a larger story about this family because the first blog was simple in it’s content. There is so much more to their story than what the first one contained. One thing that I noticed while gathering information from Lucy, about her family, is that she herself is very well written. She doesn’t require the likes of me to tell her own story. It is for this, and other reasons, that I so appreciate her allowing me to place her family’s story in this blog once more. 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 forever be royal to me. Their story would be so beautiful, even if Batten Disease was not 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.
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, she 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 her 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 he was not only good looking but he was also 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. Miked continue to play. 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.
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!
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 her. Lucy's sister had accompanied her into the labor room this time. She 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”. She 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. The baby princess 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.
Lucy would tell me 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 and they talked. They talked about all that they would look 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.....”
I will share the rest of their story in my next blog.
Forever Royal. To be continued…..
“Our hearts dropped but at this stage we knew we could deal with this and still give her a beautiful life. We went home still blessed we could stabilize this.”
Before the correct diagnosis
How would you feel if you were me and you were provided the details of all of these stories? How would it change your way of thinking? Would it change the way that you looked at life? Would it cause you to look more at the circumstances of others instead of just your own? Would it increase your sensitivity towards children, especially those that are battling an incurable disease?
This blog has become so important to me. Telling the stories of those that face Batten Disease has become my passion. I feel a connection through my writing and it will always be felt that I am privileged to be able to do so. I know that I always sound like a little bit of a broken record when I say that I am moved by the details of your journeys. It has happened on every story that I have done. My mind will wonder and there will be a certain detail that causes me to well up with emotion. Sometimes it happens in the most inconvenient places. Is there a more important use of my time? I really do not think so. It is so much better when we choose not to live our lives in a vacuum. It is much better to care than to not. I know that the families that battle Battens are so appreciative of those that follow their journeys. Some would otherwise feel very alone.
It was not my original thought but part of my goal in writing is to help spread awareness. This has turned out to be, perhaps, my own unique way of doing so. I am happy to be able to do my part. The other reason for why this blog continues to exist is to let Batten families know why I feel that they are so very special. Although there are other journeys experienced by children and their families, there are not many like the one traveled by a Batten warrior. The constant care and the sacrifices demonstrate an unordinary type of love on the part of the caregiver. The heartache is pushed off to the side as determination to do the very best for the child takes over. It may sound like I am being overly dramatic but I don’t think that I am. The way that you press on each day is worth noting. We all love our kids. I know that I love all three of mine, however the needs of my special son Benjamin have caused the bond between the two of us to be off the chart. It makes a difference when somebody really needs you. For the parent of a child with Battens, the feelings go even deeper as the little warrior becomes the center of attention while they battle.
Being involved with Batten families has most definitely heightened my sensitivity towards children. I have talked about this before. When you think about a child’s appearance you may realize that it hasn’t been that long since they were covered in that brand new baby skin. Their little faces are free of any of the lines that age and life’s difficulties bring. Their actions, although sometimes a little naughty, are so adorable and fun to watch. Their childlike innocence should charm the hardest of individuals and it most often does. Although there are lessons to learn, a child’s existence should be free of stresses that are brought on by childhood cancer or rare diseases. Sometimes that is not the case though. A lot of people know my friend and fellow advocate, Sandy Garrett. She gets completely despondent when she loses a child whose journey she has been following closely. Sometimes we chat about all our health issues and how, in spite of them, we are still here. Then we talk about how unfair it seems that one of these kids will have their little lives cut short by something like Batten Disease.
I know that disease is part of the human condition but it really does seem unfair at times. Kids are supposed to be able to run and play. They are supposed to be able to enjoy their innocent fun as they learn life’s lessons. Being a warrior of this type should be left to people other than children. Anyhow, where I would like to go with all this is that I never thought about these types of things before I started following the journeys of kids with Batten Disease. Now, these kids are sometimes all I think about. The value of their lives cannot be measured in terms of dollars and cents. They are priceless to me and I know that I am far from alone in believing that! I can’t say it enough. The opportunity to write these stories is perhaps the best gift that I have ever been given. I don’t think that it is just a coincidence that I have opportunity at this time to blog about some of the families beyond the Atlantic Ocean and in the United Kingdom. Everybody in the Batten community is special to me. I hope that you know that. There are many that I admire and there are some that I have connected with in a big way. Some are my favorite characters and one of those characters is Claire Bradshaw from St. Helens, England. She is a Batten mum to one of the most adorable little faces in the UK. Her daughter Kaycee has CLN2 Battens and she is receiving the enzyme replacement therapy that is now available in a clinical trial. Little Kaycee is yet more evidence that the therapy works. The following is a little bit of hers and her mum’s story and I am so happy to tell it with Claire’s help.
There are many wonderful qualities that make Claire Bradshaw the person that she is. My favorite is the fact that she is oh so funny. It is my belief that laughter in life is so very important and Claire feels the exact same way. Don’t you Claire? She is funny and she makes me giggle. One of the other things that I love is the fact that she loves kids. When it came to having children, Claire was busy. She had 5 children already but there was room for one more. Four of her kids are not really kids anymore. Bryan is 27 and his younger sister Natasha is 25. Callum is 22 and his younger brother Tyler is 16 years old. Claire, please don’t tell anyone this but my oldest son Daniel will be 34 this month. Oh wow! I’m getting old. If her hands were not full enough, she would have another. She brought little Tamzin into the world and she is now 9 years old. So cute she is and makes her mum so happy! Each and every one of her children are so special to Claire and they help to make this family just that, a family. There would then come one who is royal beyond compare. A princess of a most rare kind. That would be little Kaycee Louise Bradshaw who was born on the 26th of April in the year 2012. Claire would tell me that she herself is a type I diabetic and that was perhaps responsible for Kaycee showing up two weeks early. There was no reason to wait. Right Princess? Kaycee was born so healthy and a pretty healthy size at 6 pounds and 14 ounces. It didn’t matter to Claire that this was her sixth time around. The whole experience brought a lot of joy to her as she welcomed this tiny princess into her family. Kaycee was so perfect in appearance. She had all her fingers and toes and you just know that she was covered in brand new baby skin. So beautiful. She was the newest citizen of St. Helens, which had been her mum’s home for all of her life. Of course our kiddos don’t come about without a daddy and there would be no exceptions with Claire’s children. As life would often have it though, relationships don’t always flourish. Claire would spend some of her time raising her children as a single mum and that is commendable. I know how much her kids love their mum and it is easy to see why. Good things would come for Claire in the future!
As Kaycee would continue to grow, her families adoration for her would grow right along with her. She constantly had a smile on her adorable little face and she caused everyone around her to smile. One thing would become apparent and that is, that she is Claire’s mini-me. Looking at that smile it was so easy to see that she has her mum’s personality. Little Kaycee was up and running in no time at all, and she would reach all of her milestones on time. When it came time to start visiting everyone’s favorite room, wink wink, she was right on target. That right there would make every family happy! The only thing that was of concern to Claire was that Kaycee’s speech was not developing as soon as she expected it to. Claire had plenty of experience at this point with observing developing children and she had her eyes and ears wide open when it came to her tiniest princess.
The pace with which her speech was developing was enough of a concern that Kaycee was scheduled to have a hearing test. This, after attending a routine medical check at two and a half years of age. Kaycee passed her little hearing test with flying colors and Claire was told that her princess was just a little slower. Could this, however, all have been a sign of other things to come? Of course, time would move on and Claire, along with Kaycee and her siblings, would forge ahead. As a family, they had no idea what they had in store for the future. They knew nothing about the challenges that would be out of the ordinary. The only thing they knew is that Kaycee was so cute and her smile brightened the entire room on the dreariest of days. She was endeared by the entire family and her charming little self was so loved. If you could hear her laugh, you would know just why! As the summer of the year 2014 approached, Claire and the family began to notice more things that would be symptomatic of a bigger problem. They noticed that Kaycee’s eyes would flicker. This darling little girl was a livewire and she would run like the wind, but things began to change. That would be most disheartening to all that knew her. Kaycee’s legs were beginning to collapse when standing, and Claire said that she had to be picked up more and more throughout the day. Claire was told that Kaycee could have a form of epilepsy, and an appointment to see a specialist was set up. There was no way that anybody could be sure of what was going on before more tests were performed.
How traumatic it must be for any parent when problems with their child arise. Each and every little person is a gift and a treasure. It is difficult to watch a child struggle as you hope for the best but prepare for the worst. The search for answers can come sometimes comes with ease, however sometimes the answers come with greater difficulty. False answers can bring optimism that doesn’t belong. A lack of answers can bring increased tension and worry. In doing the stories that I have so far, one thing is repeated over and over. That is that parents do not give up until they know what is happening with their child. In general, they do not quit. Their determination is always worth noting. For little Kaycee the testing would include brain scans, blood tests, and and a lumbar puncture. Poor sweet thing! The test results came back and it was determined that little Kaycee had Eyelid Myoclonia. This is a form of epilepsy that was thought to be causing the flickering of Kaycee’s eyes. It is often accompanied with brief absences. Perhaps this was what was causing her little legs to collapse as well. It was on September the 14th of 2014 that this news was delivered. Was it a correct diagnosis though? Claire’s reaction, in her own words, was that their “hearts dropped” with the news. Her little girl was special in a different way. She would bring an additional challenge to the family, but one in which they could handle the situation. They could deal with Kaycee having a form of epilepsy. She could be stabilized and perhaps have a close to normal life.
As anyone might guess, and as I have already spoken about it, a situation like this could be very stressful on a family. It could also be stressful on a new relationship. In fact, that is where Claire would find herself. It was six to eight weeks before all the circumstances concerning darling Kaycee hit, that Claire would meet her future husband, Greg Riley. They clicked right away and would begin to spend time together. A lot of men would see something developing as it was with Kaycee, and decide that the situation was not for them. This was not to be the case for Greg. He saw the situation as one in which he could help and that is what he did! I have no doubt that the love that had developed between him and Claire, along with her kids, left him with no other choice. How could you walk away from little Kaycee in this time of need? In fact Claire said that she told Greg on many occasions that her situation was not his problem. Claire stated that her Greg in response, just looked after her and her daughters all the more. Outstanding. What a stand up gentleman! Oh, and did I mention that his name is Greg? Why yes I did. He is the other Greg. Or, maybe I am.
As suggested before, early diagnoses are not always correct. It was only a few weeks later that more changes started taking place in Kaycee. Ones that would heighten everyone’s concern. This darling little girl started falling harder and harder. This would occur anywhere from 8 to 10 times a day and things were getting worse by the week. Can you imagine the increasing anxiety as the situation grew worse? There was no way that this mum was going to give up until she had an answer. Doctors would continue to give the family false hope and wrong answers concerning Kaycee’s plight. Claire knew that there was more to what she was seeing than just epilepsy. I am certain that she was receiving strength from the fact that Greg and her kids were standing alongside of her, but little Kaycee was in the forefront of her mind. She was insistent that the doctors dig deeper. The answer would eventually be found, and here is how Claire would describe receiving the news, “Almost a year to the day of Kaycee getting worse. Of watching her mobility go from zooming around everywhere to relying on mummy and daddy carrying her everywhere. Receiving enormous amounts of tests on her little tiny body, we were blown away by the worst news ever.”
That news brought with it the knowledge that little Kaycee had Batten Disease, the variant CLN2 or Late Infantile Battens. Just like any parent would wonder, Claire and Greg would ask. What is this disease? What will happen? How do we cure this? Claire said that their heads dropped along with the nurses that were in attendance. Their lives were changed all of a sudden by news concerning a disease that they had never even heard of. They went from having hopes of being able to control Kaycee’s symptoms to being completely hopeless. Darling Kaycee’s life expectancy was all of a sudden anywhere from 6 to 12 years of age. Their priceless princess had a terminal disease. Claire put it like this, “Our life's stopped there and then. On that Friday, August 31st, 2016. Not even our nurses knew what Batten Disease was as Kaycee was the first child they have ever seen with it.”
Can you imagine the shock of being told that your child has a rare disease for which there is no cure? Like with all parents, Claire’s reaction shows the devastation that this kind of news brings, “Our world was shattered. I couldn't walk, couldn't move, just tears and waiting for them to tell me it was a joke. We went home knowing we had 5 other children as well as family to give this devastating news to. How were we gonna tell all the other children?”
What could they do but return home and try to make sense of things? The family was sent home with information about BDFA (Batten Disease Family Association) and were encouraged to contact them. Perhaps Claire and family could receive the support that they would need from the workers there and other families that were going through the same thing as they were. This is exactly what would happen. All of sudden, they were part of a community that they knew nothing about. They would soon discover that they were not alone in this. There was help out there from a very caring circle of support. People that understood. One could only imagine the reaction of family members, especially Kaycee’s siblings, as the news was given. The princess of the family. The one that they all adored was in trouble. After a couple of weeks, they regained their focus and contacted BDFA. Can you imagine all the things that were going through Claire’s mind at that time.
It never ceases to amaze me, although it shouldn’t. The support and understanding within the Batten community is so remarkable. Only the families themselves and those that work on their behalf can truly understand what it is like to be given this news. Claire received a call back almost immediately after she contacted BDFA. The result would continue to bring about a whirlwind of events but also some hope for a course of action. The family was informed about a form of treatment that was available. It would replace the enzyme that was missing in little Kaycee’s brain, and it was part of a clinical trial that was showing a lot of promise. This was not a cure but it would improve Kaycee’s longevity and quality of life greatly. This was something that was so important. Granting her time in hopes that a cure could be found. This of course brought up some questions. Things like, how does it work and will this princess do well with it? You would have to think that Claire’s head was spinning with all this new information. Can you imagine beng Greg and having this on your mind as you try to function at your job. As for Kaycee herself, she was, of course, unaware of all that was going on around her. There was only innocent laughter and continued smiles as this was taking place. Claire was informed that there were five spots open under the compassionate use program and her princess would be one of those five. Most any parent faced with this situation would jump at the opportunity to help their child. This is how Claire would describe her reaction, “I couldn't take and hold it all in. But one thing I kept ahold of was them saying it's been proven to be able to prolong our baby's life. With holding onto those words, I knew we were going to London for the compassionate use of this drug.”
Yes, they would go to London and not to just any place. The Great Ormond Street Hospital is part of the leading edge of the medical community when it comes to children’s health. In fact the hospital is quite famous. It was founded originally in 1852 and at the time it had only ten beds. It quickly grew into something much larger. According to Wikipedia, it is the largest centre for childhood heart surgery in the UK but it doesn’t end there. The list of things that have been accomplished at GOSH is immense and their commitment to children includes those who have Batten Disease. To that, their contribution is vast. Families that have children in a number of clinical trials travel to GOSH on a regular basis at specific intervals. I am told that the families that go there become extended family to one another and Claire and Kaycee would soon find that to be true.
So it was at the beginning of December of 2016 that little Kaycee would have brain surgery to implant a shunt. The shunt would be used for delivering the chemical that replaces the missing enzyme. It was later in the month of December that princess Kaycee would begin receiving her treatments. This required that Claire and others travel on the train with their darling to London every two weeks. The level of dedication that is shown by her and all the parents is amazing. Feelings run deep, I am sure, as one might expect. I have seen so many pictures of these darling faces with bandages wrapped around their heads. This after each child peacefully receives the enzyme replacement therapy. Claire and family lovingly refer to it as the “Miracle juice”. This because it works! It cleanses the brain of wastes that would otherwise be impossible to get rid of. It has been proven to be safe and it is very effective. To me it seems that any rational parent in the same situation would do what it takes to get their child this therapy. I, however, completely respect each family that has made the commitment to help their children. As I am writing this article, it has been 14 months since Claire and other family members started accompanying princess Kaycee to London. She is such a strong little girl and did I already mention her smile? You should hear her laugh, just priceless. According to Claire, the Great Ormond Street Hospital has become their second home and I can believe that. We need a cure to CLN2 and all the other variants of Batten Disease. In the meantime, there is this wonderful treatment available. What wouldn’t you do for your own child? Claire can’t be certain what the future holds, but she wouldn’t do anything different at this point. She shared that her purpose right now is to keep Kaycee alive and pain free for as long as possible. Wouldn’t you do the same thing?
It would be wonderful if the only thing that Greg and Claire had to be concerned about was getting Kaycee to her treatments every two weeks. There is, however, a very major concern. That is whether or not the cost of the treatment will be covered in the future. Yes, that’s right. The treatment that is now being received by Kaycee and other children with CLN2 Battens could be taken away. In fact, there are children that could benefit from the treatment that are not receiving it. This because of a recent decision made by two agencies in the UK. I reached out to my friend, Lucy Faith, in an attempt to make sure that I had all my facts straight. Most people that follow children with Batten Disease know who Lucy is. For those that don’t I will tell you that Lucy and her husband Mike Carroll are parents to two of the most adorable Batten warriors that you will find (I actually adore all of these little warriors). They are actively involved in work as advocates on behalf of all the kids with Battens in the UK and abroad. She explained that the two organizations are the National Health Service or NHS and the National Institute for Health and Care Excellence or NICE. NICE is responsible for giving recommendations to the NHS on whether or not to fund new drugs and treatments. Even though there is clear evidence that this treatment works NICE recommended that it NOT be funded by NHS. This according to Lucy was based on the fact that they felt it was not a good use of NHS resources. They also felt that there was a lack of evidence, long term. Ollie’s Army (the Carroll family) along with others in the Batten community are now involved in a Battle that is seperate from the fight against the disease. They are not giving up and are joining forces to get this decision overturned. I think that this entire issue points to the fact that government agencies can be so very impersonal in their decision process. Lucy talked about the process of evaluating the evidence and I will let her share it herself,
“The pharmaceutical company, doctors, BDFA and the parent representative (us) have put in all our evidence to NICE. We then attended the meeting in January where we were met with a panel of 18 professionals from NICE. We were all questioned on our opinions, and all the evidence and proof from the trial were shown.”
In spite of clearly showing that the treatment works, a vote to recommend funding was denied. I wonder what it is like to have to live with yourself after making that kind of decision. I personally wouldn’t sleep well after that. These kids are priceless and it is the right thing to do in making sure that this treatment is available to them. A petition has been started and at this time it has approximately 82,000 signatures. They would like to have at least 100k. If you are reading this and have not signed the petition, I would ask that you follow the link provided and PLEASE sign. It only takes a few minutes.
Kaycee is one of only five children in the UK that are on the compassionate use program for this treatment. There are, however, others that receive the therapy, and there are also many here in the United States. As I mentioned earlier, there are kids that should be receiving this treatment but who are not because of the decision that was made only a couple of weeks ago. Can you imagine what it would be like to be a parent and have to face this type of thing? Claire is not sure where they stand, and princess Kaycee could be taken off of the treatment at any time. Of course kids like Kaycee are completely unaware of the circumstances that surround them. It would be our hope and prayer that this decision would be reconsidered. It needs to be.
My last blog was about James Toohey and his mum Kate. Like Claire and Kaycee they travel to London every two weeks for the treatment. Kate talked about what it is like to go and spend time with the other families while their children receive this life changing therapy. One of the things that she included was how amazing these kids are. She brought up the fact that these little people haven’t a clue as to what an influence they are having on the world. More and more, people are learning about kids with Battens and other rare diseases through social media and increased awareness. To the caring of heart, these stories captivate the individual. They are stories of undying love and sacrificial giving. (BROKEN RECORD ALERT). Yes, and the indomitable human spirit that is displayed by these kids along with the smile that each one possesses. These children are something that you cannot put a price on. Not only that, but there is something else, in my humble opinion. When it comes to human life, you do whatever it takes to preserve it. Especially when we are talking about the most precious of children. The fact that there is no long term evidence concerning the success of this treatment means one thing. You need to create it or it may never exist. Just look at these kids and you will see that it is working! IT WORKS!
I’ve said it over and over again but will continue to make my point. Every little bit helps when it comes to raising awareness, and I have my little part in that. My real reason for writing though, has always been to honor these families in telling their stories and what they face. They move forward each day under difficult circumstances. This, while demonstrating an extraordinary kind of love. There is something about these children that I find so very special. It is difficult to put my finger on exactly what it is, but they have a big piece of my heart. The words often escape me, but it is there. Maybe it, in part, is what they teach us about ourselves and how they change us. Claire told me that Greg and her children are her rocks. They steady her. It is difficult for her to be everything all at once. That is a mum, nanny, nurse, and partner. Claire keeps her sense of humor because she feels that is the best way to deal with things, and I like that about her. Greg has the challenge of holding down his job and supporting his family with all of the distractions that take place. I know that he gladly accepts the challenge. Claire says that he is a great daddy to her two younger girls and has stayed close them throughout. He is the family’s guardian angel. As a family, they will do what is necessary in support of princess Kaycee. They are so blessed to have her in their house, and she is loved by everyone that knows her, including me. That, even though I live an ocean and a continent away.
As I was drawing close to the completion of this story, I was chatting with Claire and gathering more details. It was her bedtime there in England and I wished her a restful sleep. She said thank you and told me that she would rest well all snuggled up next to Kaycee. I wish her a ton load of days and many years with Kaycee in their midst. She is so very special (as is her entire family). In fact, she is the Priceless Princess from beyond the Atlantic Ocean. As for me, I am a blogger of a different sort, and a friend to the families that make up the Batten community. This means more to me than you could know. Thanks for having me!
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