“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