“It always stuns me that the Batten children are ALWAYS beautiful and glowing with such light and love reflected in their faces!! I seriously have a soft spot in my heart for every single Batten child. Rex, our very special angel, taught me a new kind of pure love.”
~Tina Halyama Emery~
Home Healthcare Nurse
The question was “why us” and it came from Christopher Velona. Most people know my long distance friend Christopher from Project Sebastian. People who know him, know that his son Sebastian battles the CLN8 variant of Batten Disease. You also know that Christopher has done everything in his power to help his son in the battle that is Battens (He, of course, has not been alone in this). One of the things that Christopher has done as of late is to start doing podcasts in conjunction with his other activities for Project Sebastian. I don’t know why he chose me to be his inaugural guest, but he did, and I was honored that I was chosen by him. We started the taping by talking about me and my wife Rosie’s life as parents to our special needs son Benjamin. Then we went on to talk about my involvement in the Batten community and why it is that I do what I do. I can’t remember exactly how he worded the question but it was something along the lines of, why? Why us, meaning the Batten community. Why am I doing what I am doing as an advocate? Why do I take the time to interact with Batten families, and why do I devote so much time to writing these stories in my blog? Why have I chosen the Batten community in particular?
The answer to that last question is that I didn’t choose to do this. It was just that through a set of very important circumstances that I first became aware of these beautiful kids that battle Batten Disease. Through this, a passion for them and their family’s stories was ignited. To me, it is so unlikely that I would learn about Batten Disease by following the legacy of a Navy SEAL, but I did. He wasn’t just any SEAL, although they are all amazing! Facebook and, social media in general, has taken a bad wrap at times. Sometimes, deservedly so. However, in many cases social media has been a force for good! A series of Facebook pages that led me to an underwater memorial dedicated to the legacy of this Navy SEAL would also lead me to becoming aware. My sensitivity towards people with special needs lended itself to a sensitivity to children with Batten Disease. I first began to write by writing about following this SEAL’s legacy all the way to his hometown. It was there that I also met a very special Batten princess. After that, one thing led to another.
I am a person that is driven by passion and once I started to write, the entire thing just blossomed into something special. This gave me a way to be involved in a community that I have grown to love and respect greatly. Greater awareness concerning Batten Disease was not my first thought but I think that the blog has helped with that. What happened was that I was so moved by the details of what I was writing that it continued to feed this new found passion that I have. Not only this, but the passion was fed by the appreciation that I have been shown by the families. I have repeated myself over and over again when it comes to the things that I see in the Batten community as a whole. That is so easy to do because it takes a certain type of character in a person in order to devote one’s self to the care of these children. Undying love in the face of adversity. I Understand that I am on the outside looking in and my perspective often reflects that. How difficult is it to move forward each day, knowing the eventual outcome? Deciding that you are going to do your very best in the worst situation, heartbroken and yet, resolute. What is it like to look into the face of your child each day? This, as you battle the disease together. These children seem more special than any other because of the circumstances that surround them. The whole thing just makes my heart melt inside of me.
These things weigh in heavily into this next story. There is more before we get started though, and it has to do with the Batten community as a whole. I have talked about this on several occasions. I was able to see from my activity online that the people that make up the community were very special to one another. Sure, there will always be some who will not get along but I think that this is in the minority. Being at this year’s Batten conference and seeing this group of people in person was an amazing experience for me. What is it like to experience the feelings of loneliness that comes with the diagnoses? You return home and eventually find out that you are part of a community that exist worldwide. There are others that know exactly what you have just experienced. They also know what you will go through in your journey. My next story is about a mom who went through great lengths, literally, to be at this year’s conference. This, only a short time after learning that her daughter had Batten Disease. Like many others, the answer came after a long search and several wrong diagnoses. She felt that it was so important to be at the conference and I can certainly understand why.
Laura Johnson had experienced the trauma of receiving the news that her daughter Hannah has Batten Disease and she wanted to be with others that could understand what she was facing. I had met Laura online through Facebook, of course. I knew that she was a Batten mom but I didn’t know much about her as we had just gotten acquainted. I saw that she had set up a gofundme account and that she was seeking help for getting to the conference. As it was approaching quickly, she still was not sure at that time as to whether or not she would make it to Nashville. As for me, I had made my way there and found myself at the Airport Marriott hotel. There were so many people at the conference and it would be impossible to meet everyone. I was able to spend time with most of the people that I already knew and it was especially nice to spend meal time together. As I was leaving after dinner on one of the first nights there, I took a random path through the dining room in order to exit. This particular path led me to a table that included a mom with her daughter and the mom greeted me with a warm smile. It was Laura and Hannah! It is very possible that had we not crossed paths at that point that we may have never met, but we did. I loved meeting them, along with many of the others, and we would go on to spend a few moments together on a few occasions after that.
One of the reasons why I do what I do is because I think so highly of people like Laura. She received what she needed to attend the conference just in time to get moving. Laura rented a car and her and Hannah would drive thirty hours straight to get there. To me, that is amazing as I don’t think that I would be capable of doing that myself. In the blog that I did about attending the conference, I had given the title of Tiger Momma to Laura. I meant to use her as an example of the many that represent moms in the Batten community. Moms that persevere and do whatever it takes. Always putting the interest of their child before themselves. Laura would tell you that she is just in survival mode and that she was just doing what was instinctive. I am telling you that what I see from the outside looking in is that she is amazing. Me and Laura talked about the blog and the possibility of doing her’s and Hannah’s story. To this, she said yes and so here we go!
Laura hadn’t been opposed to the idea of having children but she didn’t expect it to happen so soon. She and her future husband, who was serving in the military, had eloped. They had plans for saving and having a real wedding, with a reception, a year later. However, the news that she was pregnant with their first child changed all of that. Laura had never babysat or changed a diaper in her life and this left her worried. How was she going to care for a baby? After all, she wanted to get things right and so Laura read every baby book in the library in order to prepare herself. Talk about training through correspondence!
Having children and raising them is a life changer for sure. Laura had no idea at the time as to how this first baby would impact her life, but that was a fact in the making. She would deliver her baby at Balboa Naval medical center in San Diego, California as her husband was in the Coast Guard. They would have a baby girl and named her Hannah. The baby was born close to her due date and the day that she entered this world was September the 16th of 2003. It was after midnight that she would make her entrance and she was oh, so beautiful. She had all her fingers and toes and she was covered in brand new baby skin. Her first cry was loud and strong as she was so healthy! Neighbors were nervous as to how cool Laura was under pressure. Labor would take twenty hours and during that time, she could be seen painting her nails. This, because she didn’t want them to look bad when everyone came to see her newborn baby.
A small indication of what Hannah’s personality would be like came at the very beginning as they placed her on Laura’s chest. Hannah started to nurse right away. She would go on to be so strong and good at nursing that she actually would injure her mom in that way. Laura would have to endure this for a good year. This, because she wanted to continue nursing Hannah for as long as she could for the best start possible. The way that Hannah took to nursing would not be the only way in which she would show mom how quick she was. Hannah had a slight fever at birth and so the hospital staff kept her for three days. Seeing that they were new at this, Hannah’s parents liked this as they felt it would be good to have some back up early on. The nurses had wheeled one of those clear plastic boxes, used for a crib, into the room but Laura refused to allow Hannah to leave her arms. They would scold her for this but Laura stood her ground. Hannah was eight pounds and twelve ounces at birth and she was gaining weight already by the time they left the hospital. The nurses said that this never happens but it could be attributed to Hannah’s ability to nurse so well right after birth. Hannah would go on to be in the 99th percentile in height and weight her whole life. That though, was not the only way in which you could consider her to be exceptional.
Laura said that her baby girl was so striking although she was slightly annoyed by her daughter’s appearance. What? You see, she had carried Hannah all that time and Laura felt that she was supposed to look like her. However, Hannah was a mini-me to her dad. She had bright blue eyes and pitch black hair. Nevertheless, Laura loved her newborn baby and she was going to give motherhood everything that she had to give. As it is with most young military families, there is not a lot of extra money to spare. The young couple would leave the hospital with their newborn baby girl in a small Nissan truck. The three of them barely fit into it as little Hannah’s car seat took up a lot of space. They would take Hannah home to her first apartment which would be in Ocean Beach. This was in the greater San Diego area where Hannah would begin her life as a beach baby. Hannah would continue her development and she would have no fear as she grew. The couple would frequently take her to Dog Beach with them. Hannah was completely comfortable with the water and the huge dogs that were there. Again, Hannah was a big girl for her age. Laura said that the pediatrician would match up the rolls on her legs to make sure that they were developing equally. She joked that Hannah looked so much like a very small Stay Puft Marshmallow man!
Laura stated that Hannah would go on to meet most of her early milestones of development. The only exception was walking. In this area, she would not take flight until age fourteen months. Laura is quick to admit that, as a new mom, she didn’t know all the do’s and don'ts of parenting. This is how she would put it, “I was an overachiever mom, catching her when she fell, and giving her what she wanted when she grunted. I didn't know any better when I was a new mom.” Perhaps the only other thing that was noticed to be a little different in Hannah was in the area of her speech. Some of her words would come out sounding funny but that often happens with children as they are developing.
Laura said that Hannah would not tolerate a hearing test. This, to check to see if her speech problems were related to her hearing. As Hannah grew, it was apparent that she was extremely intelligent. Laura said that for example, she knew how to change the disc in the DVD player when she was still in diapers. It was noted by teachers that she was in the top of her class in preschool. Laura said that she had potty trained Hannah in two days. She was enrolled on Friday and started school on Monday in regular underclothes. No diaper! She would remain at the top of her class all throughout early education. You could only imagine the level of pride that was felt by all of those who loved Hannah. Not only was Hannah smart but she was determined and also beautiful. Here is more of what Laura had to say, “She was so smart and so beautiful, and also, very independent. She would never hold my hand crossing the street. I felt like a failed mom, not being able to get her to hold my hand.”
There was no reason to believe anything other than that Hannah’s future was packed full of potential. This, even with the slow start in the couple of areas that she would overcome. The future looked nothing but bright. Hannah was so sweet and so much fun from a very early age. She amazed her mother and all others who took notice of her. Even with Hannah’s independent attitude she was, overall, very well behaved. However, like the rest of us, she wasn’t perfect. Laura recalls one situation in which Hannah felt that she would take care of business when a situation in preschool arose. It happened after being picked on all throughout the day by a little boy named Tupac. It must have been at the final recess of the day. Hannah had thought about how she might handle Tupac and as a result she laid in wait at the tunnel that was next to the slide. She decided that she would clean Tupac’s clock and by doing so in the tunnel her crime would go unnoticed. She was successful in taking care of Tupac but somehow, the staff would find out and Hannah would wind up in the principal's office. This is where Laura would pick her up at the end of the day. I am sure that Tupac learned his lesson. Don’t mess with Hannah. How cute!
Hannah would also do the cutest things. Part of the families existence early on included having to move frequently. This was due to Hannah’s daddy’s military service. Hannah would observe her mom as she packed bags and dragged them to the front door. Hannah, being as smart as she was, would copy her mommy. It would be moving time and there was Hannah in her diaper, dragging her little bags to the door. There were many ways in which Hannah stood out as a child. One area was her ability to predict when women are pregnant. Laura stated that Hannah, in fact, had a sixth sense when it comes to this. According to Laura, Hannah, who was three years old, had informed her that Laura was expecting. Laura didn’t even know at the time but she was pregnant with Hannah’s little brother. In another case, Hannah had broken the news to Laura’s sister that she was expecting twins and she provided details with the news. She new that one twin would be a girl and one would be a boy. She also predicted that the girl would be born first, and she in fact was correct.That, is down right spooky!
Laura was not the type to just sit around. She has always been active in furthering her education by attending college, and various other classes. She would actually bring Hannah with her to classes and that shows real commitment. Laura attended so many classes that she started to stack up credits and would eventually apply most of them to an AA degree in Liberal Arts. It didn’t matter where they had moved to. She would be in school and gained all of her credits by attending as many as four different colleges. Moving didn’t stop her. Laura would later become very involved in physical fitness and she would, as an example, one day even become a Zumba instructor. She also would receive her certification as a volunteer emergency medical technician. The skills that she learned would actually help her save her own daughter’s life one time when Hannah was choking. Laura would admit, though, that it wasn’t a good career choice. This, because she isn’t good around blood. Yes, that is important in that line of work.
As Hannah continued to grow, it was easy to see her charm and beauty. She was so full of promise and personality. Her independence and strong will would lead one to believe that she would be successful in whatever she chose to do with her life. She was full of life and was so much fun to be with. Why would all of these great character traits not continue to develop in her as she continued to grow. I have stated the following so many times in the past. There is no love like that which exists between a mother and her child. I believe that to be especially true when it comes to a mother and her daughter. As one would expect, the bond between Hannah and her mom was especially close. Hannah would, however, have to share the love that was felt for her with a new sibling. Her new little brother James came into this world when Hannah was three and a half years old. Their little family now seemed to be well rounded and complete. A girl and a boy! Every family has its challenges along the way. Financial challenges, for example, are always a big concern. Health issues can be also. For children, there are always the usual bumps and bruises along the way. Operations to fix defects or maybe a broken bone may have to be set. Those things are normal and we expect them to happen. Although, we do not look forward to those types of events.
We normally think of marriage as being a lifelong commitment. I don’t think that anyone steps into marriage thinking anything else, however, things don’t always go as planned. People change and we are sometimes changed by circumstances that we don’t expect to happen. Kids are affected by separation and divorce but sometimes, it can’t be avoided. When it comes to these stories, the kids that battle Battens are always the focus but life doesn’t stop for the disease. By that, I mean that other things happen around us and often, they take place before a diagnosis is found. Sometimes things happen after the diagnosis, or even, as a result of the added stress. It is never my intent to assess blame or to decide who has the greater responsibility. The circumstances related to a divorce do impact a story greatly though when that story is about a child. Laura’s marriage was a troubled one and it would not last. The worst part was that she would find herself in a situation where she would have shared custody of the children. To further complicate things, custody was shared across state lines and from a great distance. The situation was a complicated one and it left Laura with only having her children in the summer and on holidays. Why would I even bring this up? It is because this story is about the love that exists between a mother and her daughter. That being Laura and Hannah. Much of the time, they were separated by several hundred miles of interstate highway. Hannah was less than five years old when this began. Her little brother was only a year and a half year in age. Oh, my gosh! How stressful this must have been for all that were involved.
Laura said that she would often return home to California with tears streaming down her face. A young mom without her children. I cannot imagine! I suppose that there is much more that could be written about Hannah’s life during the dark years of partial separation but much is lost because of the time away. I am sure that there are many sweet details that could be shared from the time that her and Laura had together. The focus here though, will shift to the challenges. It had to be at about the age of seven to eight years old that Hannah started to change. She started to exhibit signs that something was developing in her. Something that took her outside the normal range health for kids her age. Hannah was healthy when it came to illness. She didn’t catch colds easily, for example, as others might. There was, however, behavioral issues involved with her. Laura said that Hannah had a family practitioner that she was seeing while at her dad's house and that he had misdiagnosed her four times. ADHD was the first diagnosis. That one is usually the first to be thrown at kids who exhibit problems or behavioral issues. Then it was Autism and later, Asperger’s Syndrome. This happened over the seven years that Hannah was separated from Laura. During that time, Hannah was prescribed one medication after another. None of these solved the problem. Eventually, Laura would take Hannah to the Autism Assessment Center for Excellence in San Bernardino. While there, it was determined that Hannah did not have Autism.To be fair, doctors don’t always know what to do when the puzzle is a difficult one to put together. I think that the best doctors are those that are good at solving problems. They take a real interest in a child and they also know when the child needs to be referred to a specialist.
Hannah would experience her first seizure when she was eleven years old. This happened after being up late while having a slumber party. Laura said that the seizures were not very frequent but also, that she couldn’t be sure. This because Hannah was not with her full-time. It was about the same time, at eleven years old, that Hannah came home from her dad’s with glasses on. Why now? She had never had vision problems before. One of the things that caused Laura to become concerned early on was when she would ask Hannah to get something out of her room. She would return repeatedly empty handed and Laura chalked it up to a behavioural issue. It was, however, related to a loss of vision. Laura would find out later that Hannah couldn’t see. According to her, Hannah was hiding this from them because Hannah thought that they would love her less if she wasn’t perfect. Laura said that she, personally, was devastated when she found this out. I am sure that the situation was complicated by the fact that Hannah was living in two different places during each year after her parents separated. So it was over a seven year period that Hannah was either misdiagnosed or undiagnosed but things would soon change. Laura did not know what was taking place in her daughter. Whatever it was, it was delaying Hannah’s development. Laura kept investigating and would consult different specialists as she looked for answers. Something wasn’t right and her daughter was being taken from her by something. Something that she did not yet know existed. Meanwhile, Hannah’s father would become angry with Laura over the fact that she was not accepting the diagnosis from the out of state family doctor. Hannah was just being given medication and Laura knew that there was more going on than what was being discussed.
And, it was at this time that Hannah was becoming more difficult while at her father’s house. Laura said that as she started losing her vision she would get stuck on the way home from school. This, as she walked alone after getting off of the bus. She would even get stuck on the wrong side of snow berms. Hannah would call out for her mom frantically. You could only imagine that Laura was frantic as well. Knowing that her daughter may not be getting what she needed. Hannah knew what she needed, and that was HER MOTHER! Hannah would tell anyone that would listen. Teachers, doctors, nurses, anyone! She was always asking for her mother, as well as, trying to call her. As a result, she was just becoming hard to handle. My heart aches as I write this part. It was just the best thing for everyone involved that she would be with her mom full-time. And so, she was reunited with Laura! There is no love like a mother’s love. Especially when we are talking about a mother and her daughter. For whatever Hannah had going on, she needed special attention.
As has already been stated, Laura would not stop until she had the answer as to what was happening with Hannah. She continued to seek the help of specialists and that would eventually lead her and Hannah to a geneticist. Tests would be performed and the answer was found. Hannah had CLN3, Juvenile Batten Disease. So as it most often is with Juvenile Battens, there is a long search and a tendency to think that the conclusion is obvious, i.e., several false diagnoses. In saying this, I don’t mean to indict any one parent or health professional. Moms have a special intuition that cannot be ignored or denied. Laura had the answer that she sought but it was not one that any parent would want to find out about. The devastation that followed came from learning about something that Laura never knew existed. Batten Disease. This is how she put it to me, “It was truly traumatic. Nobody had ever heard of this.” She continued to explain in another place concerning her reaction and the effect that that the news had on her, “I couldn't believe it. I cried for two months. I felt just like I did when my mom died. I am not really here. I am just Hannah’s caregiver. I can’t hear what she is saying. I am grieving so hard already.”
Already grieving as if she had lost Hannah and yet functional in Hannah’s care. These comments come from a mom that would do anything and everything in order to help her daughter. I know from following Laura and Hannah’s story that she would regroup as best as she could and she now provides daily, the best quality of life possible for Hannah. Yes, emotions run high at times but it is so easy to see the love connection that exists between this special mom and daughter. Laura had a huge smile on her face when we met at the conference. There must have been a big mixture of emotions behind that smile. Her long drive to get to there shows a deep level of commitment to Hannah. It also shows the need to be connected to the others that make up the Batten community. This, because only they can truly understand what she is going through. Laura stated, in so many words, that finding a physician that truly cares is difficult to come by. They are out there though! She would meet one at the conference that she would love to have for Hannah. The fact that Laura found this doctor there at the conference speaks volumes.
The continuous driving that Laura would do in order to be with her children had conditioned her for the drive to the conference. It would be only a short time after Hannah’s diagnoses that they would find their way to Nashville and I am so glad that they did. I know that Hannah has her bad days and I am sure that she is often frustrated as she goes through changes because of the disease. She is so sweet. It was special to be able to meet these two. Hannah was quiet and soft spoken. I could tell that she was happy to be there and I know that she was made to feel welcome by those who cared for her. These, after all, are people that understand. Hannah was so happy to show off the things that she was making in craft time and she was such a pleasure to talk to.
These kids should be fussed over because they are truly special. What a dear she is! Hannah and her mom, as well as, the entire Batten community are the reason why I am writing at this time. It started with the love I felt for one little girl and her mom. This soon spread to an entire community and I feel privileged by every story that I am allowed to write.
Laura is a very bright and intelligent person. That is easy to see by what she has already accomplished in life. This leads to a question. What would Laura be able to accomplish if she was not struggling with Hannah’s disease? You see, this is the type of thing that I have talked about when I have mentioned the sacrifices that Batten parents are often asked to make for their children. This is especially true when we are talking about single moms that cannot work full-time, and sometimes not at all. For Laura, it is a struggle to pay bills and to keep a roof over her’s and Hannah’s head. She has been advised by some to put Hannah in a full-time care facility. Laura stated the fact that this is too difficult and too expensive. She would go on to say that which I already knew to be the true of her, “ I cannot give up. I will serve her selflessly until I die.”
Laura has gotten some really amazing moral support from her boyfriend who regularly spends time with her and Hannah. I love it when I here about men that step up to the plate (a baseball term), so to speak. There are so many men that would see a situation like Laura’s and say, no thanks! You already know how I feel about things and it is so nice to see another guy that feels the same way. What’s his name? You’ll never know because he chooses to remain anonymous. An unsung hero. Laura says that his life has been greatly affected by Hannah’s life. Just like I thought. Being around these kids can change a person. They make yours heart go pitter patter. That is if you are the right type of person. Life can be stressful in such a situation as Laura’s and her boyfriend chooses to stay in her life in spite of the stress that exists. Laura would actually tell him that he should leave for his own sake but he refuses to do so. She puts it like this, “I have asked him to leave, to save himself, for his own sanity. But he stays with me for mine.” He has even stayed although it may have kept him from maintaining certain career objectives. Together, they enjoy taking Hannah on outings to places like Lake Havasu for some fun in the water.
I have said it before but I will repeat. I believe that these kids come into people's lives for a reason. Then again, it would be so easy for me to say something like that. I am a proud parent to an adult special needs person but I have never experienced what a Batten parent has. The journey brings with it many special memories but it also brings a ton of heartache as changes take place. Laura had the following to say about her daughter, “Hannah is so bright and so determined. She would be a force worth reckoning with if not for this fatal detrimental disease. She was at the top of her class until the disease started taking effect. It is awful and nobody knows our pain, not even close family.”
In another place, she talks about Hannah’s resilience, “She has an active imagination and loves to play with toys. She does her own research on YouTube on batten disease and toys she would like to own.”
Laura enjoys working at a ranch that uses horses as therapy for kids with special needs. It is called T.H.E. center ranch (stands for therapeutic handicapable equestrian). Hannah received a scholarship after the nine months that it took to complete the process. She now gets to ride for an hour a week and Laura is working on becoming an instructor there. Her desire would be to become an instructor full-time. This, if Hannah’s situation would allow her to someday. What a rewarding career it would be to assist those who have special needs. All because she is the mom of a very special warrior princess! One might think that there aren’t any silver linings when it comes to Batten Disease. One of the few positives may be the people that you meet. In the course of the journey, you become part of a great extended family. One that understands what you are experiencing and feeling. Many of those friendships will last a lifetime. Laura had this to say about her experience and meeting people in the Batten community, “I had never heard of Battens until her official diagnosis. Not even a guess. I was shocked. I am never to be the same. Some of the people I have met from the Batten community have been life changing, they are so strong and so positive. I am glad to have been able to be blessed to have met them.” I have read comments like this from many now. In fact, I have witnessed it first hand. This truth, concerning the Batten community, is another reason why. Strength in the face of adversity.
Life is a struggle for Laura right now as she cares for Hannah. Yes, there are some good things happening as well but the challenges remain. Financial hardship is a big one for her. There is no way that she would do things differently but she wishes that things were not so difficult. I am glad that Laura has discovered the support that is available to her through the Batten community. I wish that there were more people outside of those who battle Battens that could step up. Someone like Laura is so deserving, and what about Hannah? Meeting her was a pleasure and she is so special! More than anything, these kids are the reason why I write. I love my special needs son so much and I have no regrets about having him in our home. What I see in the circumstances surrounding kids with Batten Disease is so much more challenging than anything that we face. Batten kids tug at your heart like none other. They battle so hard and show us so much about resilience and the indomitable human spirit. They often love and are loved in ways that others are not capable of. I know that it has taken me a bit of time but does this explain the reason why? I hope so. Prayers and best wishes to Laura and Hannah. I hope to see them again next year in Denver, if not sooner.
Blogger and Advocate
I don’t normally use this blog as a tool for fundraising. That as it is not my purpose in doing what I do with this blog. I am posting the link to Hannah’s gofundme account because this particular family is in great need. Laura is so deserving of any help that she gets and it’s Christmas!
She is a great mom and, as the saying goes, she is stuck between a rock and a hard place! This last statement from her says a lot about her as a person, “I feel numb. I am not sure how to feel right now. I am weak but strong for my child. I am humbled beyond words but willing to help others and have been volunteering to help with horses.”
Please help if you are able. Click on the link below:
“I knew Oscar’s time was limited and I wanted to share with everybody how amazing he is. I want his life to be filled with happiness, joy and love. It really gives you a new outlook on life when something like this happens. You realize how short life can be and how important it is to make the most of everyday.”
Oscar’s mum sharing
her purpose and
why she started “Oscars Story.”
I am not sure how it is that we met online but I am glad that we did. Like myself, Holly Linville had attended this years Batten conference in Nashville and she had been deeply affected by what she had experienced. Holly is a nurse by profession and she resides in the area around greater Nashville. She was asked if she would like to work at the conference and agreed to do so. She had never heard of Batten Disease up to that point. In addition to being a nurse, Holly is the mother to two boys, ages three and six. She loves what she does as a nurse and also as a mom. After making introductions and beginning our first chat, she described herself as being a true Empath, or someone who is able to show true empathy for someone. One page that I visited stated that Empaths are able to absorb other people’s emotions and or their physical symptoms. These people are highly sensitive. You can only imagine how the combination of being a true empath and a mom to young children affected Holly as she learned about Batten Disease. This, while working at the conference.
Of course, a light bulb went on in my thinking as I thought about using her experience at the conference in a introduction to a blog story. I asked and she agreed to help. I ended up sending her four or five simple questions to answer and then went on with other things. Time went on and I wasn’t hearing back from Holly. I have a no pestering policy when it comes to this blog. I leave people alone when I don’t hear back from them, and I move on to the next thing. This is such a sensitive area and I am truly sympathetic to that. Anyhow, it would be weeks later that Holly would get back in contact with me and she told me that she would not be able to help. Among other things, she said the following, “I truly admire your work. Truly. But I just don't think I can contribute anything positive to your writing.”
Holly had been affected by what she had experienced at the conference above that which an average person would have been. This, as she cared for these dear children. The following is more of what she had to say, “I have nothing nice to say concerning Batten's Disease. I think it is a cruel and devastating disease and I cannot wrap my head around what the children and parents have to go through. I really have nothing nice to say about the Disease.” I can only agree with her comments. There is nothing good that could be said about Batten disease. It truly is hideous. Especially because it impacts children. These kids are so precious! Being with these children and seeing things first hand actually sent Holly into a depression. She said that she would find herself crying at various times. It would happen while sitting at a stoplight (Um, I can relate to this) or as she lay in bed falling asleep. It also happened as she held her own children tight. In fact, she still cries when she sees social media posts about these kids.
She expressed that the whole thing was hard to take in. I think this is because she truly does take things in. She has the ability to internalize things. Holly said that she is a pretty capable writer also (not that I claim to be). I believe her. She shared more about her experience and while doing so, actually started to contribute the type of thing that I was looking for in the first place. Here is what she had to say as she brought a child and her mother, from the conference, into the conversation, “At the conference, I tried to do the job I was paid to do. That is to care for the children and keep them entertained. I was holding it together in the activity rooms. I was playing with the children etc. There was a lot of distractions.....kids playing, parents coming in and out etc. I was distracted and busy. Then I went back to the "nap" room and met Caleb Johnson. His mom said he was tired and asked if I could stay with him, as she wanted to attend a certain seminar. So, it was just me and Caleb. He started whimpering some, so I got him out of his wheelchair and held him like a baby. He was the most beautiful little boy I had ever seen. I couldn't hold it together any longer. It was just me and him. My tears started flowing and I couldn't stop crying. I just don't understand why this has to happen to these beautiful children. I can't imagine what their parents are going through.” Oh, my goodness! I couldn’t believe what I reading as she said this. Holly had already stated that she had nothing to contribute.
As the chat continued, Holly would continue to give me exactly what I needed. This, as what she had to say included her feelings about little Caleb and his dear mom, Ashley Johnson. Holly would also say some things that would relate very well to the mother and son that are the subject of our next story. This amazed me as she originally felt that she would not be able to contribute. In a few sentences, she would share some of the things that we’ve already talked about in this blog. Holly used a quote that she had heard previously in relationship to what she had witnessed about Batten parents. Here is the quote, "You don't know how strong you are until being strong is the only choice you have." Her observation was that Batten moms and dads are so strong! I have said, in the past, that these are ordinary people that have been asked to do something that is extraordinary. And yes, I do believe that in the process, they become stronger than they might ever have imagined they could be. This is, of course, an outsider’s point of view but I don’t think you could argue with it.
Holly had the following to say concerning Batten parents in general and Ashley in specific, “The love she has for him and trying to help him experience fun things while she still can. As with many situations in life, I think, for the parents, it must come down to either giving up all together or making the best of the time they have. Ashley has chosen to move forward and do the very best she can for Caleb. She gives it her all. Driven by pure love for her son, that is what keeps her going. She takes one day at a time and makes the best she can of each day. I admire her courage.” You know what Ashley? I do too! These are the types of things that we’ve talked about in the past. These are the things that amaze me! The bond that is created being one of those things.
There is another story in the UK that takes place and it relates so well to what we have just talked about. It is happening across the Atlantic Ocean, approxiamately 4,000 miles (6437 Kilometers) away from where the Batten conference was held. What Holly stated about a mom in the US is also so true about a young mum in the UK. Her name is Carrie Baugh and she is the mum of a most charming little man named Oscar. This story belongs to them but it also represents all of those, worldwide, who battle Batten Disease. Here we go!
Carrie was young, but that didn’t matter to her. She was just so excited that she was going to be a mum. This was something that she had wanted. She loved children and looked forward to it with great anticipation. Carrie was seventeen and had been with her boyfriend for two years. She described the day that she found out she was pregnant as the happiest day of her life. Her pregnancy would go so well. She had no sickness or weird cravings and everything went smoothly. The only difficult thing was that her baby was very active inside of her. In fact, the baby loved kicking her in the ribs. This, to the point that it made them sore. It became painful to her to have this going on but she felt that it was a good pain. This, because it was an indication that her future bundle was healthy. Carrie was so happy even though she was a little bit sore. She was going to be a mum and Carrie was very excited about this!
The smooth pregnancy would give way to some challenges though. This, as it was time to bring her baby into the world. She would do so two weeks earlier than expected. Carrie remembered that night like it was yesterday and recalled the events that started as she was sitting at her partner’s home. It was just like any other night until she began having cramps of a different kind. The cramps would begin to get longer and more painful. That is when the couple called the hospital. This all would take place on February the 4th of the year 2013. It was around 8pm that they were told to head to the hospital, and so they did. Things were not progressing very quickly and Carrie was dilating slowly. The pain, also, was not getting any worse so they started to settle down into their hospital room in order to get some sleep. This baby had other plans though and so Carrie’s water broke. From that moment on, the pain would become worse and things really started happening. She recalls that at that time, she was taken to the delivery room with her partner Jake. Carrie is loved by her parents and she is especially close to her father. In fact, to her, he is closer than any other. Her father had arrived and she wanted him at her side during this experience. How very special is that!
Carrie would work for a few hours, pushing, but they weren’t getting anywhere. She was losing too much blood and doctors felt that the baby was becoming distressed. That is when it was decided that it would be best to perform an emergency caesarean section. Carrie recalled that all at once, The delivery room was full of people, all with faces that she didn’t recognize. You can only imagine what a whirlwind of events this must have all seemed like and Carrie describes what it would all come down to, “The next part I remember is being wheeled out, back out into the ward, and standing over seeing Jake, my partner, holding our tiny little baby. He was so healthy and so beautiful and they placed him onto my skin and I felt so blessed. I always had wanted kids, I love children! And now I had one. I was aware how young I was, but I always felt like I was born to be a mother.” In fact Carrie was born to be a mother and now she was. Every mom, or mum, remembers the time that she delivered her very first baby and her life is impacted by that event. Carrie could not have known at the time, however, the impact that this particular baby would have on her life. She had a boy and he was the most adorable baby boy. They would give him the most adorable name to match and that name was Oscar. Oscar Luke Somerfield was born on February the 5th of 2013. What a beautiful name!
Life is all about learning lessons and that would especially be true for Carrie as a new mum. The first year with Oscar was a difficult one but Carrie would have her father around to help. As she would put it, “I was lucky enough to have my father around to help. He was brilliant and honestly, I don’t think I could of done it without him.” It was at the time that Oscar was six months old that Carrie and Jake split up and that would make things especially difficult. Carrie said that she was already learning to be a mum and now, she had to learn how to be a single mum as well. Oscar would meet all of his early milestones and this made Carrie happy as she watched her little man develop. He was so much fun to be with. Carrie said that he was the happiest little person around, and in fact, he still is! Can you tell by looking at him? Yes, I think so! The truly beautiful part is that as Oscar was growing up, Carrie was growing with him. She thought that being Oscar’s mum was the best job ever. Who could argue that was not the case? Carrie and Oscar were living with her father when she decided that it would be best for them to become independent. She wanted to set a good example for Oscar and felt that having a place of their own would help with this. Being a mum was important to Carrie and doing the right thing was as well. She wanted to support herself and her son while living on their own.
Carrie had never worked before but the time was now. According to her, she had left college when she had gotten pregnant with Oscar and had never gone back. Motivated by her love for her son she went out and got two jobs in order to afford their first flat. This all happened when little Oscar was two and a half years old. You would think that this would create a lot of stress for this young mum as it had to be a challenge. It was, however, in Carrie’s own words, “so wonderful”. Carrie and Oscar were really enjoying their new life and the time that they spent with one another. I was left with many images in my mind as she described their time together. She said that Oscar would help her cook up their tea and they would sit down together at meals, just the two of them. Then, Oscar would help Carrie pick out a movie to watch on the television as they finished their evening together. There were already many precious memories being formed together. No one can know what the future will hold as life moves forward but Carrie must have believed that her future with Oscar would be bright. What would he grow up to be? Where would all that personality take him in life? The possibilities were without limit.
Life would continue and as Oscar turned three years old it would be time for him to begin going to school. He would attend nursery class at the local primary school and this would be one of his first big life events. What should have been a time of innocent fun and early life lessons would become complicated by some issues that plagued little Oscar early on. Carrie said that it was at this time that Oscar was losing his balance while at school. She was receiving phone calls where she was told that he was falling over for no apparent reason and without cause. It was also noticed that he was not developing at the same rate that his little piers were. One example was that his vocabulary wasn’t growing. This all caused Carrie to become concerned, of course, and it was decided that Oscar should be seen by a health visitor. Once there, Carrie was told that Oscar was just slow and he would eventually catch up to the others. Mothers know their children like no one else can and Carrie knew that something more was going on in her son’s case. There was more to this than just being slow.
Carrie stated that things would escalate quickly and Oscar would have a seizure while at school. I am sure that this was frightening, no matter what. Tests would be run on Oscar and as one might guess, he was initially diagnosed with epilepsy. Carrie said that she was not surprised with the early diagnosis as many of her family members had epilepsy. Was this really all that was taking place in Oscar’s case though? The truth would find its way to the surface as events continued to develop. As Oscar’s mum, Carrie knew that there was more going on with him. As you would expect to be the case, she would seek answers for what was taking place. Carrie would not rest until the question as to what was really going on was answered. Oscar and his mum would return to see his health visitor and this time, Carrie would demand that her son be seen by a pediatrician. In response, she was told that it could take up to twelve months to get seen. What? How could that be? That is unacceptable by any standard. Whatever was happening, things were progressing too quickly and Oscar needed to be seen. Carrie would make the decision to pay in order to have Oscar seen by a private practice physician. This took place at Spire Cardiff Hospital in Cardiff, South Wales.
The search for answers most often brings with it a false diagnosis at the beginning. Many receive several as they seek to put the puzzle pieces in to place. Oscar was given the diagnosis of Cortical Dysplasia while at Spire Cardiff. This condition is a congenital abnormality of the brain’s development. This can be the cause of intractable, or hard to control, seizures. The quest for an answer as to what was happening would start to progress but receiving the answer could not come soon enough. Oscar was then referred back to Glangwili General Hospital so that he could be seen more quickly. Poor Oscar’s condition was getting worse as the days continued on and more appointments were made. Carrie said that the first few visits were mainly for blood work as the medical staff tested for many different things. By this time, Oscar was turning four years old and changes were taking place. Carrie stated that he had completely lost his mobility and he could not even sit up by himself. Oh, how difficult this must have been for Oscar, as well as, for all who love him. I have often talked about what a child’s life should be like. Innocent fun and happiness should be the order of the day. We hate to see it when something like this takes place. How was all of this affecting Carrie?
There were also issues taking place with Oscar’s eyesight. Carrie stated that they would learn that Oscar had very poor vision after attending numerous ophthalmology appointments. In fact, he had very little eyesight remaining at that time and it was due to the damage in the back of his eyes. Whatever was taking place, this was definitely more than simple epilepsy and I think that people understood that at this point. Carrie was in the midst of a journey with Oscar and with every new bit of information the heartache would increase. This is what she said concerning the news about Oscar’s eyesight, “This was unthinkable. We had no idea he would lose his sight. It was unexpected and heartbreaking. I tried my best to learn sign language to communicate with Oscar after he lost his speech. Now, finding out his sight is being taken from him was too scary. I didn’t know how I was going to communicate with my baby anymore.”
A disability team would be assembled for Oscar. This, as a result of his growing needs. The team would include an occupational therapist, a speech and language therapist, a physiotherapist, and a neurologist. In addition to all the services that he was receiving, Oscar also received a walker. Carrie said that this was “magical” because he was able to walk on his own for the first time in months. Unfortunately, this would only last a couple of months because at that point, Oscar was no longer able to stand at all. This must have been so discouraging. His lack of mobility would cause Carrie to ask for a wheelchair but again, she was told that it would take months to be seen. Oscar was of course growing and he could no longer be carried. Carrie would, once again, have to take action on her own. She went out and purchased a disability buggy and it would cost over 300 Euros. As a single mum, Carrie’s income was an issue with all of the added expenses that came with having a child like Oscar. She would apply for a Disability Allowance for him and would have to fight extremely hard to get it. Carrie said that the process took months because Oscar did not yet have a diagnoses. I can understand how difficult this must have been for Carrie. Still not having an answer for herself added to the difficulty of getting what she needed for her son. There was also the need for a specialized type of schooling for Oscar. Carrie would tell me that he was placed in an assessment school until space was available in a program that could more fully address Oscar’s complex situation.
As 2017 rolled around, there would be more challenges and increased concerns. Osar would have to go through much and watching it all happen was so difficult for Carrie. On top of the symptoms of Oscar’s condition, there were all of the blood draws that he would have to endure. Carrie said that drawing blood from little Oscar is awful. It is hard to find a vein and it is a struggle to get the blood out even when one is found. The initial testing was not performed because the samples had been lost. This meant a loss of valuable time. Of course that meant more blood work had to be done. Then again, a few months later, Carrie was told that the amount that was drawn was insufficient for testing. That meant more blood draws and Oscar would cry non-stop during each one. This was so heartbreaking for Carrie to watch and so frustrating as well. She said that all in total, Oscar had five to six lots of blood tests in the span of six to eight months. She also said that the amounts that had to be drawn were not small. I am sure that it was easy to lose track with the number of tests that required blood, however, the experience is difficult to forget. The blood was drawn in order to test for a number of conditions but there was still no answer as the end of 2017 was approaching.
All of the tests had come back clear but there was one test result for which the medical staff was still waiting on. That was for a condition that was named Batten Disease and this was something that Carrie had never heard of. As with everyone else that learns about Batten Disease, Carrie was made aware of the fact that the disease is rare and it is fatal. The fact that it is very rare often leaves some within the medical community unaware of its existence. Carrie said that Oscar’s consultant seemed to speak with uncertainty as he informed her about the disease. She went on to say that he only knew of two cases within the UK. Carrie explained what her thinking was at the time she was informed about the possibility, “They told us that this disease was extremely rare, and then I thought to myself, there is no way Oscar has something this bad. I was adamant that it couldn’t be this, so I was worried about the results. Something like this doesn’t happen to normal people I thought to myself. Oscar was just extra special and he would be okay in time.”
In fact, Batten Disease does happen to normal, everyday people. It happens to families from all walks of life and levels of income. It doesn’t discriminate for any reason. While it may be classified as a rare disease, it really affects many more children than one would expect with it being considered rare.
There would of course be other types of testing that would take place. An important one is an MRI and Oscar would undergo that test. As one might guess, he would would have to be anesthetized in order to have the test performed. All would go well and Carrie would return home with Oscar. It would be the end of last year that the doctors wanted Oscar to have another MRI performed and this one wouldn't go as well. Oscar would not recover well from the anesthesia. Carrie explained her response in part, “A moment like that, you don’t think will ever happen to you.” There is always that risk when anesthesia is involved and for someone like Oscar, who was medically fragile, it is an even bigger concern. That experience was, of course, frightening to Carrie as Oscar had to stay in the hospital to recover. She explained that her “heart dropped” as she saw Oscar struggle to recover this time around. MRI testing is always performed in a search that includes Batten Disease as a possibility. Doctors can generally see differences in a child’s brain that may cause them to look further through other means. The doctors could see that something wasn’t right with Oscar’s brain. They explained the things that were difficult to understand but it was obvious that Oscar had a major issue going on. Carrie recounted all of the testing that he had to endure in addition to those already mentioned. They included included Scans and Xrays, EEGs and 24-hour EEGs, Lumbar Punctures, and well, you name it! The results of the EEGs would reveal that an enormous amount of seizure activity was going on in Oscar. The poor guy had to be such a trooper and one has to wonder what he was thinking during all of this. Still, He smiled brightly on every occasion that he was able to do so. Such an adorable little man he is. What a little warrior and a handsome prince!
As 2018 came around, Carrie would have other concerns as well. She said that it was necessary for them to move to a different place. This was, in part, because she could no longer manage getting Oscar up and down stairs. Another factor was that they were not allowed to make any adaptations to their dwelling place that would benefit Oscar. Carrier said that they contacted the housing counsel to see if they could help with this. After a wait, of course, they were able to help Carrie find a new place for them to live and it would fulfill their needs. It had been fitted with a hoist for Oscar and it had wheelchair access. The only problem was that it was further away from family and friends but still, this made Carrie feel like things were falling into place. In addition to the new dwelling, Oscar was given a spot at a new specialist unit at school in March of 2018. This was huge for him and Carrie said that the staff there gives Oscar so much love and respect. They are wonderful and provide him the bests days that he can have! But still, there was not a complete answer as to what was going on with Oscar. That would soon change though and the change would happen as a letter was received in May of 2018.
Carrie was informed through the mail that Oscar had an appointment with the pediatrician at Glangwili on the 22nd of May. They also had an appointment scheduled for a week later at Cardiff Hospital to see Oscar’s neurologist. They assumed that the purpose of the later appointment at Cardiff was to discuss the findings of Oscar’s test. It was, however, at the earlier appointment with the pediatrician that the outlook for little Oscar would be changed forever. This, much to everyone’s despair. Carrie, and company, had arrived early with Oscar and had taken a seat in the waiting room. Much to her surprise, they were called in to the appointment room in only a couple of minutes after arriving. This was just supposed to be a routine appointment with the pediatrician.
However, immediately after arriving, the doctor informed Carrie that the results were back and that through gene testing it was determined that Oscar had the CLN7 variant of Batten Disease. Carrie described her response and what she was thinking as she was given the news,
“It was true, it was all true and it was real. He had this horrible disease that none of the doctors or us knew anything about. I was wrong, things like this do happen to every day people, it was happening to us. To my Oscar. My heart dropped and I felt one tear drop from my eye. All I really wanted to do was crawl up into a ball and call my dad. I felt like a little girl again, scared and afraid.”
And yet, Carrie knew that for the good of Oscar, she had to Continue on with the appointment. Her role in Oscar’s life would become even more vital than before. She continued to tell me about the appointment,
“I knew I had to listen to the doctor and take in information as it was so important to know exactly what we can expect and the next steps moving forward. So, I wiped away my tear and pulled myself together. I asked as much as I could about this disease and the doctor told me all he could. I looked over to Jake (Oscar’s father) and he was silent. I could just tell he was as heart broken as I was. In a way, it wasn’t a surprise as we knew it was the only thing they were testing for now. But also, it was so unlikely that I almost made up my mind that he didn’t have it. Now I was wrong.”
Oscar has Late Infantile Batten Disease(CLN7). It is the gene that has been identified by researchers as CLN7 that is responsible for this variant. Both Carrie and Oscar’s father Jake were carriers of this gene and that is why the disease is rare. To the best of my knowledge, CLN7 Battens is one of the most rare variants of the disease. This is an aggressive form of the Battens and as far as I know, there is not a clinical trial that is yet available. Oscar and everyone that loves him would find themselves to be on a journey. He would become a warrior and a prince of a rare kind.
With receiving the news about Oscar, Carrie wanted to share his life story with others. This, in order to let people know what an entirely special little man he is. He is so very special. Just look at that smile. It is undeterred, even with everything he faces, and it is one of his trademarks. Carrie started a blog page on Facebook and she called it “Oscars Story.” She keeps people informed about events in Oscar’s life while sharing the struggles, as well as, the joy that he brings to people that know him. Talk about on the job training. As Oscar’s mum, Carrie has certainly been through much. Carrie said that the months following the diagnosis were “hectic”. According to her, everyone got involved as the number of Oscar’s appointments only increased. These were with specialists and Oscar’s palliative care team. Dealing with the issue of palliative care was especially difficult on Carrie and she explained why that was, “This was hard. We had the talk about an end of life care (plan). Oscar was only 5. How could we possibly be planning end of life care for him? It didn’t seem real, but it was. They told us that the sooner he had one in place the better, so we needed to think it over and just prepare for it. Again, how can you prepare to put a plan in place for Oscar’s end of life? I was feeling exhausted and stressed.”
In fact, Carrie began to have issues with her heart because of the stress. The doctors would give her the “all clear” on the health of her heart and they told her that she needed to stress less. Her feeling in response was “how is that possible?” The good thing is that Carrie had since begun a new relationship with her partner Simon who was around to help her with many of the physical tasks. He was also a big help mentally for Carrie.
This was a good thing because the challenges with Oscar became more complex. The following describes what she and Oscar’s father Jake would have to endure (not to mention Oscar). It also gives examples of the types of things that are faced by some of those who care for these beautiful children (they are so beautiful). This is all of what Carrie had to say, “Oscar began to stop sleeping, he was jerking A LOT, and he started to develop some choking issues. He was missing a lot of school and he couldn’t manage his food properly. Giving him all his medicine was a task (and he had a lot). He has medicine for his muscle stiffness, seizures, reflux, sleeping, dribbling, and constipation. Oscar was then given an Ng tube. This alone was terrifying. Me, Jake, and Jake’s mother all had to learn how to give medicines, do flushes and feeds, etc. We had to look out for important signs of infection or any issues like the tube going into his lungs. I was petrified. If I got anything wrong, it was my fault. And I couldn’t do that to Oscar. But then, two months later, I could do it with my eyes closed. You certainly get used to it, and now Oscar can have his medicine and nutrition without an issue.”
In addition to all of this, Oscar was pulling out his tube on accident quite a bit and this meant trips to the hospital at Glangwili. This, in order to get a new one inserted. It would happen mostly on the weekends and while he was at his father’s house. Is Oscar worth all of this trouble? Dear God, yes! Just look at him. Whatever it takes!
What are the things that we have talked about in this blog? The things that we see in these families that face Batten Disease? Each story begins with the joy that comes with welcoming a child into the world. Sometimes we touch on the expectations that one might have for the life of that child. Then, things begin to happen that no one would expect to happen. There is, all of a sudden something very wrong and a search for answers takes place. Sometimes that search takes a very lengthy period of time and sometimes the puzzle is put together more quickly. The search takes place while the child suffers setbacks and symptoms that leave people confused and dismayed. When the answer is found it brings with it devastation that has to be experienced in order to be understood (I don’t mean to be overly dramatic, but this is really the truth). Devastation gives way to determination to do everything that is possible. This, in order to provide the best and brightest quality of life. To provide the happiest and most loving home. To make the most out of the worst situation while making the sweetest memories in the process. All, while remaining broken hearted. Through this, we observe undying love and a bond that is so strong and so sweet (Such is the bond between Carrie and Oscar). We see ordinary people that are asked to do something that is extraordinary. This is not even to mention what we see in these children who become little heroes. In them, we see resilience and the display of the indomitable human spirit. What we see are little (sometimes a little older) warriors that can subdue us with their innocent smiles and laughter. All while they battle so bravely. All of this is what we see in the life of Carrie and Oscar, Just like we see it in Ashley and Caleb. These are things that have been observed recently by my friend Holly and these are the things by which she is so deeply moved. I am amazed when I watch from a distance the things that to others may seem like just a matter of survival.
Oscar’s needs continue to increase in complexity. Carrie was waiting on a new wheelchair for Oscar at the time that she sent me their information. She was also waiting on more testing before Oscar recieves a PEG. Carrie tells me that this is a tube that carries nutrients and medications directly to the stomach lining. You see, Oscar has had a terrible time with reflux issues. It is so difficult to consider that an end of life plan for Oscar has to be put into place but, in fact, it does. I just cannot know what it is like for such a young mum like Carrie to have to go through this. I am glad that she is surrounded by people that love her and Oscar. What a character builder this is. What a wonderful mum and person Carrie is as she has set aside everything in order to care for Oscar. Is he not adorable? He sure is! The following are some of the things that Carrie had to say about Oscar and the love that she has for him,
“He is the most beautiful child in the world. He is always happy, despite everything he goes through and he is a real hero. He is my hero. He has taught me so much, and changed me into a better person. This disease is awful, but it makes him ten times more special️.”
“Most parents regret not spending enough time and appreciating these moments more as their children grow up so fast. I was given the opportunity to love him so much, and to appreciate every single day I get with him. If there’s one good thing to come out of this, it’s that.”
“Our future is still unknown. We know Oscar has got a short life. And every time he loses a skill, or deteriorates a little more, I’m reminded of it. But what I do know is that I have some time left with him. In that short time I will spend as much time as I can with him and make the most of each day. I will try to make Oscar smile and laugh as much as I can, and I will remember these happiest moments we make together, forever.”
Carrie Baugh, you are incredible! There is no way that I can capture all that is taking place in the life of this amazing little man and his mum. The varied emotions that are felt, as well as, the many stresses of dealing with the disease. There are also many sweet details that I would not have room to list. I did my best, however, and there are some things that I am absolutely sure of. The impact of Oscar’s life on Carrie is one that will last a lifetime, and her own experience is one that others will benefit from. I am convinced that while these kids lives come about through a rare set of circumstances, they are by no means an accident. They have real purpose in coming to these families at the time that they do, and their impact will be felt forever by those who love them. They are truly amazing! These are the things that we’ve talked about and they are the things that I will continue to make people aware of as I have opportunity.
Blogger and Advocate
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
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