Where am I? What kind of a title is that? Well you see, I am in between blogs about Batten warriors right now. There will be more on the way if everything goes well and do I expect it to.
The last two blogs were quite a bit of work. Lucy Faith did a fantastic job of providing me information and I thought that everything went well. The more information that I am given, the more detailed the story will be and I was given her family’s complete information. Wow, what they have been through just to bring four children into the world. That, even before Battens came into play. The families in the UK that have children with CLN2 Batten Disease are dealing with so much right now. The threat of having treatment for their children removed must be devastating. To have that hanging over them is a huge challenge in addition to the one they already face. My thinking when I approached Lucy was that they, as a family, are now so well known. Perhaps it would be of no use to her and Mike to work on a blog with me. I was, however, pleasantly surprised at her response and I was extremely happy with the way that it turned out. It was a lot of work but well worth it.
I first started this blog in order to share the experience of being a parent to a special needs person. It also was for the purpose of sharing some of the things that I had experienced as a result of reading a particular book named FEARLESS. I have shared in the past that it was because reading this book about a Navy SEAL that I eventually became aware of Batten Disease. How is that possible? Well, you can read The Blog About My Blog, and that would fill you in. It’s right here on the home page. Just scroll down and you will find the link. I had heard the term blog before I started blogging, but at that point I didn’t really know what one was. I think that most blogs have daily or weekly entries but this one is different. Most blogs have information that people may find useful for living life or perhaps they exist to share thoughts or opinions. This one is different. The original content shared my experiences about my following the legacy of a Navy SEAL. It also talked about how I traveled to see his hometown and also to meet the little girl who first made me aware. There was a time when I was wondering what or who I would write about next. It would be a bore to most people if I was to write about myself. The question of what to write about next didn’t last long. Through a series of events, I started reaching out to families who had children with Batten Disease. Since that time, I have never been without a family to blog about. This blog is different because it tells the stories of families that go through the Batten journey. It does so from an outsider’s perspective with the help of the families themselves.
You may ask why am I doing this. What motivates me? This blog has become my life’s work outside of my normal job. I put an awful lot of time into it. If I am not writing, then I am doing something else in preparation to do so. It has been an amazing experience for me. The stories started out being somewhat simple. I have learned a lot along the way about gathering information and how to process large amounts of information. I have brought my son Benjamin into the discussion several times and have talked about the special bond that exists between us. I have talked about what it would be like if we no longer had him. A large void would appear in our lives if he were to be missing all of a sudden. We have no idea when that will take place or if it will happen in our lifetime. For the Batten family, things are different. For them, there is, in a big sense, a course of travel that is unavoidable. The actions that I see on the part of the parents are to me unparalleled in terms of their devotion to their child. Undying love is still a phrase that fits so well with the Batten community.
A young and single mother uproots herself. She moves away from her family in order to help her daughter receive a form of treatment not available in her area. This, knowing that it will only extend her daughter’s life in the hopes that a cure can be found. A cure for a terminal disease that she, up until recently, didn’t know existed. She is helping her little girl to battle the disease and the results are wonderful. During a chat about the whole experience, she tells me that anyone would do what she has done. You can’t tell me something like that and expect me to believe it. This same mom told me that she “loves her daughter so much that it hurts” (I am not done using this statement). That is the kind of thing that causes my emotions to get stirred up. I think about these things in the most inconvenient places. At work, while I am with my co-workers, driving down the highway, or while I am getting ready to pull up to full service gas pumps. As a parent to a special needs person, I can tell you that the level of devotion, and often, the sacrifices that I see in these families are well worth my time in writing. In fact, I need to do this!
Batten parents will sometimes maintain their own blogs concerning the things that they and their child are going through. I highly recommend that you patronize their blogs if you want first hand information. I hope that you will read both mine and theirs though. The things that I write are a combination of information given to me by the parents themselves and my own observations and feelings. There are some things that I can relate to directly and there are other things for which I can only try to show maximum empathy. The empathy that I have is not something that is forced but rather, something that I desire to possess. Let me tell you something. I do possess it. I am stating the truth when I tell you that I love these kids. I hope that you don’t mind. The same is true when it comes to their families. It is just the way I roll. I have my base of supporters of course. I have had several people express to me their appreciation for helping to spread awareness about Batten Disease. I so appreciate everyone’s kind words. I do like the fact that I have carved my own niche for spreading awareness but that was never my intent. My main reason for doing this has simply been to honor people within the Batten community because I have been so touched by their stories.
I get a variety of responses when I tell people about the blog. I think that most people are not able to place themselves in my shoes. This is so different than what the average person commits their freetime to. Sometimes, I will be talking to someone, explaining what I write about, and they will have this reflective look on their face. It is like they are trying to process what they have just been told. It is a little different but my heart is really in this. I look at life a lot differently than I used to. My life isn’t so much about self indulgence anymore. Don’t get me wrong, I can certainly be that way at times. It is true, however, that my short and long term goals are different. I now have an additional purpose or calling, if you will, in my life. I have had it suggested a couple of times that I should take up writing about wounded warriors. That would not be out of the realm of possibilities for me. I could contact the Veterans Administration or a veterans group and volunteer my time in working with warriors of a bigger variety. You know what though? I wouldn’t want to quit doing what I am doing currently. I would only want to add to it.
I have a really good friend who a lot of people know as Christy Gerrell Bac. She is the mom to a beautiful young girl named Amy. Amy is battling CLN8, Batten Disease. Christy’s husband is a different kind of warrior. Retired from the Air Force, it was discovered that Chad had cancer in his colon. Chad is battling hard and many people are praying for him in this most difficult battle. Can you imagine what it is like for Christy? How does she handle having two thirds of her small family sick like this? I don’t have a complete answer but she tells me how she handles it, in part. Simply put, she pours herself into writing and she writes extremely well. I cannot believe the level of talent that she possesses although I know that people like her exist in other places. Christy really deserves to have her books go through a publisher. Her ability to create characters and to carry them through in length just amazes me. In fact, I was perhaps a little bit jealous of her God-given talent. Then I thought to myself, It’s not that I don’t have an ability to write. It’s just that I am more of a journalist than I am a writer. Christy is one type of writer and I am another. If I had her level of talent, I swear that I would no longer be turning wrenches. What I do though, does have its place. My place now, and until there is a cure, is with these families for as long as they will allow me. By the way, Christy is self published on Amazon. You have to read her books on a Kindle, which I happen to have. I have been reading one book of hers after another. Just keep in mind that they are not for kids.
As I have already stated, I have a passion for telling these stories. I do so while pouring as much feeling into them as I can while also maintaining accuracy. I don’t know this for a fact, but it seems like the number of people that look at the blog on a regular bases is declining. This is not a big factor in my motivation to continue. I can see that people are reading the stories as they appear in the blog and that is good enough. It is nice though when I see that a lot of people are reading the various stories in between the times that new ones come out. That means greater awareness. I do see evidence of that at times! I can imagine that my detractors will think that it is useless to continue to read these stories. They may be thinking that, well here we go again. Just another story about a kid with Batten Disease. It is my belief that each one of these stories is unique and each one of these families stories are worth reading about. Whether we are talking about a well known family that has a lot of support in their local community or a single mom that is struggling to make ends meet. They all have to deal with this dreadful disease. The pure devotion and undying love exists in both sets of circumstances. Batten disease has no prejudice although certain variants may be more prevalent in certain places. Different stories, different circumstances, but the same pure devotion with varying but touching details. Let me also add this. You can put into the place of these families those who are dealing with different forms of pediatric cancers and other rare and fatal diseases. Pure undying love and devotion exists in many other cases.
So I have received an overall positive response from the Batten community when it comes to these stories. I also know that there will be those that are skeptical of what I am doing. I suppose it is true that, for whatever reason, the blog is not for everyone. Like I said earlier, some parents have their own blog. That’s wonderful. Others, just want to share their journeys on their own. Some just want to keep everything in private. You are certainly within your right to not participate. Please know though that everyone has a story to tell. Everyone that is dealing with Battens or has dealt with it had plans for their family. Those plans have been interrupted and their lives have been changed. If you don’t mind, I would like to tell your story. The heartache that is mixed with tender details. I have had the privilege of blogging about a lot of families now. This is so appreciated. There are some that I have talked to and some that I would like to approach. Some have said no thanks and that is certainly okay. I have not gotten back to a couple of families that I have previously talked to. I am so sorry about that. PLEASE! If you would like to be included, let me know. Don’t be afraid to ask. Also, Just because I send you a friend’s request it doesn’t mean that I am doing so just to get a future story. I follow the journeys of these children just to be a support to others. If an opportunity to write about that journey becomes available, then great! Again, if I ask and you are not interested, just say no thank you. Honesty is always the best policy. There are always those who say yes. If you change your mind after doing so, just tell me and there will be no hard feelings. The journey is a difficult one and all of you come first. Do you have some junk in your trunk that you don't want shared? Well, don’t we all? I just want you to know that I always keep things positive. I always say that “Life Happens” and the stories revolve around these little warriors. Plain and simple. I realize that it is sometimes difficult to share an experience that is so disheartening. I completely understand. Your kids and their stories are so sweet though. Please give it some thought.
Okay, so here we go, gulp! The next subject is putting ads that would generate a profit into the blog. Let me start by emphasizing something. This blog has never been about making money and it has never been my plan to do so. We are talking about the lives of innocent children and young adults and I never wanted to use that to increase my income. I have never contemplated putting ads into the blog just because of the way that things might appear to people if I did that. The reason I bring it up is because I would like to know what people in the Batten community think about this. It does cost money to maintain this blog but it is a cost that I gladly assume because I love what I do. The reason why I think about the ads is because of what could be done with the money. The people that know me best, know that I love to give to families that are in need. Lets face it. Dealing with this disease is very expensive. The thing is that I am the sole breadwinner at this house and so my ability to give is not that great. I don’t know how much money would be generated by the blog. However, if it was to become self-sustaining and I was able to give to research and those in need, well that would be a good thing. Wouldn’t it? I don’t know. Maybe that would complicate things and my fear has always been that it might drive people away. I would try to make the ads suitable to the types of items used in the Batten community. Your opinion would be greatly valued. It’s just a thought and I could go either way.
So where do I go from here? I will write as many stories as people will allow me to. In the beginning they were pretty simple. The stories have grown in length and have become more detailed. There is more commentary from me and more information about your sweet warriors. I hope that more people will say yes as I continue to reach out to the community. They are your stories and you have a say as to the content. The writing style is mine but I will work with you. I will repeat the fact that being Benjamin’s Daddy has lended itself to my sensitivity towards your children. My challenges pale in comparison to those experienced by all of you but I try to understand as best I can. It wasn’t that long ago that I loaded my little family on an airplane and traveled over 2,000 miles so that we, in large part, could meet the Batten princess that made us aware. It might sound hoaky to some, but my life was changed by that event. I have heard stories about the Batten conferences that take place each year and I have seen pictures taken at the event. I have even written about it in spots and I think about how incredible it would be to see it in person. I have always been a little jealous of the fact that I couldn’t be in attendance when they are going on. To be there and to meet so many of these little warriors in one place. Wouldn’t it be awesome if I could go? Well it would be for me and you just never know. I may show up sometime. Until then I will continue to write for as long as I am able. Thanks for following along. There is more to come!
Blogger and Advocate
“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.”
Part of what makes these blogs is selecting the photos that I feel work well with the story. I think they help make the articles what they are. Choosing the best ones makes a difference. Don’t you agree? I’ll be looking through people’s photo albums (with their permission of course) and I will spot just the right one to use at the beginning of the blog. I’ll see it and say to myself, “That is the one. Right there!” At that point, the picture becomes associated with the title of the blog. The photo that you see here, at the top of this blog, is the one. It is amazing and it has been my favorite for some time now. There have been many a photo taken of Ollie and Amelia, but to me there is not another one like this one. It is a priceless work of art. Lucy has a way of working the camera. She knows how to capture the charm of her two little warriors so that we can all enjoy them from far away. This one paints a picture. It’s a picture that needs no words to tell a story. It portrays a close bond between a sister and her brother but they are not just any pair of siblings. They are on a journey together and I just bet that the bond between them is incredibly strong. With everything that they face, they do so together. This picture gives the appearance of Ollie needing comfort. It also appears that Amelia is providing it. This picture is simply beautiful and it goes well with a beautiful story.
I noticed a comment from one of the Batten parents when I first started writing these blogs. It was simple and it stated the following. “He’s writing about us.” I think that my feelings at the time were, “Why yes, I am. And for good reason.” It has been well over a year since I started and my feelings haven’t changed. Every day I go home to my sweet wife and my special needs son, Benjamin. The bond between us is strong and it is to me, an incredible thing. I have made this point over and over but I will do it again. My sensitivity towards my son has lended itself to the fact that I have a sensitivity to kids with rare diseases, such as Battens. There is always something really sweet about a child’s dependency on a parent or caregiver. The feelings that surround these stories are an addiction of mine. One that I have no intentions of giving up. What is it like to be told that your child has a disease that is terminal? That is a question that I have thought about often. Thinking about what these families face often brings me to tears.
This is a story about a young couple that fell in love and wanted a family together. Their dreams would come true but the fulfillment of them would not come without some big challenges. Mike and Lucy met and were inseparable from the time that they did. They made plans and worked at achieving goals together. This included achieving career goals and having the family that they dreamed of. Lucy gave birth to three sons and they were so excited. Mike and Lucy had no idea that a prince was in their midst but there was something really 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. While things seemed like they couldn’t get any better, they did. The entire family was elated with the news that a princess would soon make her appearance into the household. Although she gave everyone quite a scare, she 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 breath 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 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. Oh man! 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.The appointment was made for February the 13th of 2015. 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. Within minutes of entering they were given the news as Ollie sat upon Mike’s knee. Ollie had CLN2 Batten Disease. They were informed that there is no cure and no treatment. Every time 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. The disease is so rare. While there, they would learn that Batten Disease was genetic and, 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. I had found this quote from Lucy that I used in the original blog. She 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.”
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 remained 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.
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.
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.
“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.” This was written by me in my first blog about this family, My Kind of Royalty. These words all still stand true. I know so much more about Ollie and Amelia’s journeys, 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. There is another thought from the original blog that I would like to convey to you.
This is what I had said back then, “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.
Blogger and Advocate
Of course Ollie's Facebook page is found easily by typing Ollie's Army into your search window on Facebook.
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