“....then I broke as I realized I was also writing down a bucket list for him. No parent should ever have to think of the worst case scenario or have to write bucket lists and try to rush memories. It does also make you think of what is precious and what matters more. Where it's up to us to decide what's important. In other words, what fights I want or don't want.”
For most people, it is the normal thing to seek a mate and to want a family. It is what we were created to do. Some people are different in that respect and that is fine as well. I never had made any real concrete plans concerning a family. It was just the natural thing to do as life moved along. I met this really sweet girl 35 plus years ago and we wanted a family together. She was one of seven children and my parents had three boys. I was born in the middle of two other sons. Having children generally goes hand in hand with marriage although there are exceptions. It never dawned on us as we were having a family that we might have a special needs child one day but it happened. We have no regrets as we absolutely love our Benjamin. Our lives were changed though when he came into this world. Even if we had developed plans for the future, they would have been altered by his appearance. In the beginning, there were lots of doctor appointments and trips to the hospital. It took some time to get his seizures under control and there were, of course, other issues that needed to be addressed. Things have really settled down now even though Benjamin still does require a lot of attention. The amount of joy that he brings to this house cannot be measured. I have no idea what the future holds for him, but the memories that he is supplying us are things that we will always treasure. I have always had a sensitivity to people with special needs. Well, at least for the 27 years that Benjamin has been on this planet.
Something About These Children
When it comes to kids in general, I have not always paid that much attention. By that, I mean that I haven’t always put that much emphasis on little people. What I am saying is that they haven’t always been my focus. It is true that you have to be a pretty hardened individual to look at a young mother and her child and not be affected by what you see. The difference for me these days is that children (and sometimes young adults) have become my focus. As a result, we will be in a public place and will see a little person that has just learned to walk or one that is especially adorable and I will take notice and watch. There is a reason for this. The parents, If they happen to notice me, would have no idea why. They wouldn’t know how following children and young adults with Batten disease has affected my sensitivity towards children in general. But it has! I notice kids more now. I have used a phrase before that is quickly becoming my motto. It goes like this, “I hate Batten disease, but I love the families that battle it.” I cannot tell you the amount of tears that I have shed on behalf of the families. Their stories create a mixture of emotions in me and feelings that are now a part of who I am as a person. I will never be the same.
As I write this, It has been a few days since I had placed a post on social media concerning my writing about Batten families. I am always pleased to see positive affirmation from those inside the Batten community concerning this which has become so important to me. One set of comments that I received was from Bekah Bowman. Her comments concerning these stories showed her appreciation towards them, but they also revealed much about her own experience. Bekah and her husband Danny are parents to not one, but two boys that were diagnosed with Late Infantile Batten disease. Their beautiful son Titus has gained his wings and Ely continues to battle. What an inspirational family they are! In the post I had this to say, “It is a very difficult thing to be told that your child has a rare disease for which there is no cure. There is nothing worse. I am inspired by the way that each family handles their situation and they are so appreciated.” They are in fact, all dear to me. Bekah, in part had this to say in response, “...While you share 'Batten stories', each family has their unique journey of traveling through such brokenness, and every one of those kids and their families have something valuable to teach the world. I love that you continue to share my fellow Batten family's stories. They are all incredible stories of courage, pain, joy, beauty, grief, love and more. All deserve to be told.”
Two People Meet
Bekah is so right. Not only that but she speaks from experience that can only be gained by walking in a Batten parents shoes. These stories do deserve to be told. They are all incredible for the very reasons that she pointed out. Telling these stories has become a big part of my purpose and this is definitely my passion. This next story takes place in the capital city of Edinburgh, Scotland of the United Kingdom. There are so many stories that could be told in such a beautiful and important place. A place that is rich in history and culture. None of those stories, however, has the importance of the one I would like to tell. This particular story is about John Trayner and Valerie Mcneill. Two young people that met and fell in love. They were both 18 years old when they met. John and Valerie worked at the world famous Edinburgh Zoo and that is where their relationship began. John worked in maintenance and security, and Valerie was a catering assistant. They were very much attracted to one another and a bond was formed that included the desire to have a family. Their hearts desire would soon come true in the form of a special little bundle.
As November the 4th of the year 2008 approached John and Valerie were anticipating one of the biggest events of their young lives. That is the birth of their first child. They were so terribly excited as the day approached. This couple was uncertain about what the future held for them but they did know one thing. They wanted to be a family. Three, maybe four children was a number that they felt would make their family complete. It was on that day in November that their plans would begin to take shape as little Kayden made his appearance into the world. He was so perfect in every way. He had all his little fingers and toes and you guessed it. He came brand new to the showroom floor complete with that new baby smell. As Valerie held Kayden in her arms for the first time, she knew that her life was changed forever. She felt that it was for the better and who could argue with the fact that was indeed the truth. Valerie was never the type that was career driven and she was constantly changing her mind as to what she wanted to do in life. With her newborn son in her arms, she felt that she had purpose. As she would tell me, she felt that unconditional love that she had never known before.
Kayden was born without any complications. He was healthy and he was a perfect size baby at 7 pounds and 15 ounces. Sounds a lot like an eight pound baby to me! Valerie would tell me that he was a really happy little guy from the start. As he continued to grow, he filled the house with joy and his happiness spread to all who spent time with him. He always had a smile on his little face and as such, a family friend nicknamed him “Smiler”. The nickname spoke volumes about Kayden and why would it not be true. A childhood should be filled with lots innocent fun and laughter. Having a smile on your face should be the order of the day and for Kayden it was. I am sure that he was the center of attention and everybody’s focus. Kayden would achieve all of his milestones and this pleased mum and dad. Everything looked wonderful for this little guy and his parents were so pleased. The future was bright and they must have had big dreams for their son at this point. What would he achieve in life? There was nothing unusual about him that stood out and the possibilities for Kayden were without limit.
He was a busy little man as you might expect. When it came to the terrible twos, Kayden was all about that. In fact, he loved that stage of his development so much that he kept going with it. This according to his mum! She remembers that she would tell other people that the terrible twos were just continuing on. She heard this was the case from other mums about their children, and so she didn’t think too much about it. Kayden would of course grow to love activities that were physical in nature. He loved things like tennis and football, and according to his mum, anything “Sporty”. Valerie would go on to say that he would try anything once! His most favorite thing of all was and still is professional wrestling. His love for wrestling was fostered by the fact that it was a favorite of the entire family. Kayden is also a lover of dogs. His mum said that he was and still is to the degree that perhaps he should have been one himself. She would refer to Kayden as her “dog whisperer”. As Kayden’s fourth Birthday was approaching his mum and dad decided that it was time to make things permanent and official. They would wed on August the 3rd of 2012. It was a big event and it was done in Scottish tradition. Kayden was their Page Boy and he looked so handsome in his kilt. Handsome yes, but perfectly adorable too. Look for yourself. Not only did he look handsome but he performed his littles duties so well!
Things were really shaping up and you can sense the love that was felt among all of them at that time. A life together. As a family. It had just begun and the future looked so bright. A little over a year later, on August the 24th of 2013, Kayden would become a big brother to a little guy named Kodie. For the Trayners, the entire experience of holding a newborn baby would happen all over again and it was beautiful. They were so excited as their offspring grew by a multiple of two. Not only that but Kayden now had a little brother. Their family felt complete and Kayden had someone to spend his time with. He had a playmate and a companion. His mum saw a tag team partner and someone he could teach his love for wrestling to! Valerie had visions of Kayden being a doting and protective big brother to Kodie. A life companion to him, no matter what. This is so very special! There was no way that at that time they could have imagined taking a journey of a rare kind together. At this time Kayden had a command of the alphabet. He could read and write in large part and he knew his colors. Valerie said that Kayden knew the theme of most of the wrestlers by age three. That had impressed her and those that were around them as a family. She thinks about this often. It was at age 6-7 that Valerie started to notice that things were not quite right with Kayden. She put it like this, “I couldn't quite put my finger on it but just certain things didn't make sense.”
Valerie first thought that the things that she was seeing in Kayden were related to behavior. This lead her on a search to find answers with Kayden’s behavior in mind. She compared symptoms she would find to what she was seeing in order to find an answer. She told me that it was as if there was a tennis match going on in her head. She would think one thing and as she searched on Google, she would undermine herself. Did Kayden have ADHD? Perhaps, but he wasn’t hyper. Was he then just suffering from Attention Deficit Disorder or ADD? Was she looking at Autism or was it nothing at all. There were several people that were telling Valerie that he was just a typical kid who was approaching seven years old. She felt that maybe that was the case but her motherly instincts were telling her otherwise. At that time the family was in temporary housing and all of this was adding more stress to the situation. She kept running through the things that were taking place and was thinking through the situation. Valerie commented on some of the things she was seeing in Kayden, “It was things like him getting excited over a bus pass and his need to tell everyone, everywhere we went. His need of wanting your constant attention no matter what else you were doing or if you were talking. It was also a constant worry as he liked to tell everyone, especially when on the bus. He's a chatty boy, like his mum, and would tell people where we were going and who he was with. He would still do this after the constant chats with him about stranger danger and the pros and cons, etc. He was doing this at school also.”
Kayden also suffered from a lack of concentration unless the subject was something that he was focused on himself. Valerie would ask Kayden to recite his contact information to which he would become confused when trying to do so. This happened while Kayden’s friends from school could rattle the same thing off without any problem. Concerning his concentration, Valerie said, “It was as if there was a switch being flicked on and off continuously.” Like any parent would have, she consulted with doctors but she was told that he was just a “typical boy”.
I think that doctors often times make judgements based on observations made during a 15 minute appointment. Often times, they dismiss comments made by the parents because they feel that the parent is not educated enough. The time spent at home is invaluable though, as no one knows a child like a parent does. No one could possibly know Kayden like John and Valerie. It amazes me how mothers will watch their children and observe them and their behaviors like no one else can. They know their child better than anyone else. The term “Doctor Mom” comes to mind. In Valerie’s case, Dr. Mum is perhaps a better fit! As was already stated, she knew something was up and she would continue to look for answers. The next thing that would cause her to be concerned about Kayden was issues with his eyesight. Valerie stated that on a day when she was visiting her mum that they observed Kayden sitting literally right in front of the television. When Kayden was asked to move back his response was that he was sitting that close because he could not see. Valerie went on to say that she looked at her mum while being confused over what Kayden had just said. According to her, he had passed his eye test at school and he was doing well there. Even with his homework.
Valerie’s mum urged her to take Kayden to the optician for peace of mind and so she did. Tesco Opticians was near their house so it made sense to drop in. Kayden was tested and Valerie noticed how much the testing had changed since the time she was little. She tried to explain the problems that she was seeing with Kayden’s concentration, however the lady helping them just smiled and went on with the testing. The optician told kayden what to do step by step as Kayden would talk to her in between about his life. Valerie became concerned as Kayden started to guess about things that he should know the answers to. Things related to shapes and the alphabet. Valerie again mentioned Kayden’s concentration. It was suggested that Valerie wait outside as another lady entered the room, thinking that it would be better to work with him one on one. In the end, She was told that Kayden needed glasses. Kayden was excited about that but in time Valerie would realize that the glasses were not helping as he was forgetting them. Valerie would go on to say that homework was becoming more difficult and the level of frustration was increasing. Kayden was turning lights on a lot and his reading was slowing down. Again, as his mum, she could see these things happening. To her it seemed like everything was going backwards.
The road to a diagnosis is often long and difficult and she was concerned. Thinking that perhaps the strength of his prescription was wrong, Valerie got him in at a different optician. This time she went to Specsavers to see if they could help. Again, she brought everything up to them. The testing was basically the same, only the room was darker this time. Kayden would guess at the answers unless the things he was looking at were big and bold. Valerie was told that all was fine and that Kayden just needed a slightly stronger prescription. However, after a couple of weeks had passed she realized that nothing had really changed. It was during this time that she received some advice when she was having a conversation with another mum and explaining her frustration. The mum told her that she needed to keep fighting for Kayden if she felt something wasn’t right. This no matter how many times she has to repeat herself. She went on to state that Valerie is Kayden’s mum and she is the one that knows best. That was rock solid advice gained through experience! The mum that Valerie was talking to worked eight years to receive a diagnosis for her own child. She went through many different professionals to do so. Valerie knew that she was right and that she had to continue to fight. She proceeded to take Kayden to the doctor and this time she would put her foot down while keeping herself together. This in order to make herself heard!
Searching for Answers
It was the first part of 2016 by this time when Valerie received a referral from the doctor to go to CAHMS (Children and Adolescents Mental Health Services). Valerie was relieved that she was apparently getting somewhere. This even though the doctor may not have fully understood what Valerie was trying to tell her. The day of the appointment with CAHMS was also the day that the Trayners would be moving again. This made for a stressful situation but they had no choice in the matter. Valerie was the person that needed to provide the information. Kayden was asked to draw in order to occupy himself. Instead, he wanted to chat with the case worker and he kept rushing the pictures. Valerie, then handed her phone and headphones just so that they could talk. As the conversation concluded Valerie was told by the worker that she definitely wanted to see Kayden again. This however would have to wait as there was a six month waiting period. What? This family needed answers now! During the visit she told Valerie that it didn’t seem like Kayden had ADHD as his teacher would have said something. She did see that there was truth to what Valerie was telling her and the Trayners were advised to come back. In six months.
In talking to Kayden’s teacher, Valerie was told that if Kayden could have the teacher’s attention the entire time that he would take it. She said that there were times that Kayden would interrupt and then go on to tell her what color of shirt he was wearing. It had to be perplexing to try to understand what was going on inside of Kayden’s mind at this point. How frustrating it must be when you are trying to correct something and you don’t know what it is you are dealing with. Valerie would tell me that her and Kayden’s teacher discussed using a reward chart with him because his behavior was up and down. They were also still dealing with the glasses issue. Valerie’s frustration continued to grow but she remained determined. As she would tell me, “I was starting to feel that maybe it was me and I was just doing and going about everything the wrong way. I had to keep going though. I was on the right path. I just had to keep fighting so I made ANOTHER appointment with Specsavers.”
My admiration for Valerie at this point in the story continues to grow! Valerie recalls that it was March or April of 2016 that she would return to Specsavers. This time she repeated herself while giving more details. She stressed how she felt about the way that the original testing was performed. Valerie stated that she did not feel that it was working for Kayden and as such, she got results. The result was that she was given a referral for Kayden to go to the Princess Alexandra Eye Pavillion. While there, they would be able to spend more time with Kayden and would perform more extensive testing. Valerie agreed that this was needed and she felt that it was another step in the right direction. She was just taking things one step at a time while being firm as she fought for Kayden. She knew that something more was taking place and she needed answers even though the outcome might bring distress. As she would tell me, “Not once did I stop to try to think of what the worst case scenario could be. Maybe I didn't want to know. Maybe I just knew there was something but didn't want to know what.”
The appointment for the Eye Pavilion was made for June 17th of 2016 and they were on time at ten o’clock. Valerie said that she will never forget what was said as the appointment progressed. The physician turned to Valerie and stated that it appeared that Kayden could not see out of his right eye. If he could, then his vision had to be blurred. Things continued to become more telling. Kayden was asked to put a tissue in the trash bin. When directed to do so, he tried to put it in a box instead. He then was redirected to the bin. The following is more of what Valerie would tell me, “Things started to makes sense but why hadn't I picked up sooner, why hadn't the opticians. She also proceeded to tell me that no matter what age the child, if the glasses were working he would have kept them on, even a newborn. Hence why he kept taking them off.” Drops were put into Kayden’s eyes and additional testing was done. They were very thorough. The pieces to this puzzle were beginning to come together. After the testing a conversation took place in which it was told that Kayden most likely had a form of Retinal Dystrophy. The family was then told that Kayden needed to be referred to Children’s Hospital in Glasgow. There, they would have the type of equipment that would allow more extensive testing to be done. Unfortunately they were told again that it would take a few months. In the meantime, the family looked for ways to assist Kayden in performing tasks throughout the day.
The appointment at Children’s Hospital would take place sooner than expected. On July the 21st of 2016. There they would perform Electrodiagnostic testing on Kayden’s eyes. This type of testing measures the amount of electrical activity in a particular part of the body. In this case, it was used to measure the amount of function in Kayden’s retinas and optic nerves. If an abnormality was to be found during the tests, brain and retinal disorders could be investigated further. John would accompany Valerie and Kayden as they made their way to Glasgow. They had explained to Kayden, at his level of understanding, what was to take place. Valerie said that Kayden did a brilliant job while there, even to the point that the doctor was impressed. Unfortunately, they would have to wait until early August to get the results as the doctor was not able to give them to the Trayners at that time. It was also in July that John and Valerie would find out that she was pregnant for the third time. They were excited but Valerie also had mixed feelings with her concern over Kayden. They always said that they wanted three children and that a girl would be nice. What was going on with Kayden though? In Valerie’s own words, “ We were scared and nervous and excited as you get anytime you find out you are pregnant. However, when I thought about Kayden, I felt dread only because I didn't know what was in store for him. Would he go blind or was it more? Would his brother end up the same. It was hard to decide and concentrate on the future when we didn't know about the now. But I kept saying to myself to be positive and all may just be okay.”
Piecing the Puzzle
It was on the 6th of August that the Trayners had an appointment at the Princess Alexandra Eye Pavilion to discuss the test results from the hospital in Glasgow. At the appointment they were told that most of the retina at the back of Kayden’s eyes weren't functioning. It was the part that recognizes colors and pictures. Valerie would say that again, another piece of the puzzle was found. This helped them to make sense of what they were seeing at home and at school. As they were being seen, John and Valerie mentioned the pregnancy and their situation in temporary housing. The consultant said that he would write a letter for them to give to the council. This in order to help explain their situation with Kayden’s condition. The changes in housing had to be extra difficult while dealing with Kayden’s condition. In many of the stories that I have done so far, there have been several instances of misdiagnosis and delays that have wasted precious time. The fact that Valerie fought for Kayden made a lot of difference in him getting the attention that he needed. It is not that the other parents hadn’t fought. It’s just that the physicians in their community were sometimes slower to figure things out. In this case, the puzzle pieces were being fit together and genetic testing would fill in the remainder of the puzzle. While at this same appointment, the referral was given to have the testing accomplished. Valerie would emphasize the importance of this taking place, “‘.....he referred us to the genetic testing as he was most certain that this was genetic and testing for this was of great importance for Kayden, his siblings, and of course for us.” And so it was on the 26th of August that Kayden and his family would attend an appointment with a Dr. Lampe at the Genetic Services.
While there they explain to the doctor what they were seeing in their son in relationship to his Retinal Dystrophy. Valerie also informed the doctor about her current pregnancy. Her first scan was scheduled to take place in the middle September. The doctor explained that these investigations were done by taking one step at a time. She did share that they would try to speed things up because of Valerie’s pregnancy. At this time the family was unaware as to whether or not Kayden’s brother Kodie or the baby would inherit what he had. John and Valerie would have a blood sample drawn for testing. Valerie explained in her own words what she was feeling as new information was given to them by the doctor, “She also spoke about investigating the possibility of metabolic and neurological conditions. She explained that some of these are progressive in nature and affect the brain in addition to the eyes. I broke between the seriousness of what I was hearing and my hormones. I couldn't believe what she was saying. Suddenly I got flashes of my boy from birth until now. What if kodie was to go down the same route? After all there was no significant signs with Kayden. I remember us walking out of that hospital, looking at each other and John just hugging me and us both saying how that definitely wasn't what we were expecting.” Kayden would, of course, take things in stride. He had an appointment on the 29th of August to have blood drawn at the sick kids clinic. Valerie was nervous over this, but not Kayden. As it turns out, he loves getting poked and getting blood drawn. I am sure that other parents would love that to be the case. Valerie remarked that his bravery brought her peace of mind. Kayden was even more excited that blood had to be drawn from both arms. As a result he left that day with an extra prize for having done so!
Just like any other young couple that desires to have a family, there is no way that the Trayners could have anticipated the type of difficulties that would lie ahead. Difficult decisions and hardship are not the types of things that we normally plan for. It was now the beginning of September of 2016 and it was little Kodie’s turn to be in the spotlight. He was starting nursery school and this filled him with a mixture of nervousness and excitement. John and Valerie’s little man was starting out in the big world. Later, having completed his first day, Kodie returned home skipping with excitement. It should have been a happy occasion but Valerie had been having problems throughout the day with morning sickness. By that evening the problem had become so severe that she had to be taken to the hospital by ambulance. Valerie was suffering from hyperemesis. She ended up being in the hospital for three weeks. Valerie stated that she was unable to eat and drink, and she was even having problems swallowing. She was weak and said that her head was all over the place. She was missing her children. John was left with working in the night, taking care of the kids, and making trips to visit Valerie. How difficult this must have been, especially with Kayden’s condition still being unknown. What about the extra attention that Kayden required? They had Valerie on an IV drip to get fluids and she stated that she was feeling like a pincushion.
It was during her second week, on the 14th of September, that a nurse brought news to Valerie’s room. Dr. Lampe was coming to talk to the young couple. Valerie said that her heart sank within her. This because she knew that the situation had to be serious for Doctor Lampe to visit the hospital to discuss things. Valerie went on to say that she sat there watching the clock until she was wheeled to a private room for privacy. Dr. Lampe made it to the room and once there went over the findings of the tests. The news and Valerie’s reaction is as follows, “...she told us that Kayden had Juvenile Batten disease, also known as CLN3. How myself and husband both carried a faulty gene. I had never heard of it. The majority of what she said was a blur. I couldn't process what she was telling me I just kept looking at John then holding my belly. She explained how I needed to think on what to do now and that they could provide prenatal diagnosis if we wanted. The doctor said there was a 1 in 4 chance of Kodie and this pregnancy to be the same as Kayden. I wanted my boys and to hug them so tight. Once she left I kept looking at the leaflet which broke it down but I still couldn't process it.”
Valerie said that she felt responsible. Questions came to mind. Could she manage a newborn when she didn’t even know what dealing with Kayden’s condition would entail? What if one of the other children had it? What if she was in the hospital for the entire pregnancy? Her boys needed her. What John had been managing for a couple of weeks, may turn into months. The possibilities would result in the Trayners having to make the most difficult decision of their young lives. This is a couple that wanted three or four children. The thought of terminating a pregnancy would have never entered their minds but the decision had to be made.The following quote allows us to understand what this mum was feeling at that time, “It was the toughest decision I ever had to make. I was slowly starting to understand Kayden’s condition but we still didn't know what the next stages would be and when or if his brother had the disease. However, I did know that I had to put Kayden first. I couldn't manage all this and a newborn. I felt horrible for even thinking or making termination an option but my boys needed me. I cried and cried every day and night. Being on a ward with other pregnant women and having a woman giving birth on the ward tore me even more.”
Living with Batten
While they were still in the hospital a friend that the couple had worked with decided to open a gofundme account for Kayden. This so that the family could raise as much money as they could in order to make memories with Kayden. That is where my opening quote, which is from Valerie, comes from, “....then I broke as I realized I was also writing down a bucket list for him. No parent should ever have to think of the worst case scenario or have to write bucket lists and try to rush memories. It does also make you think of what is precious and what matters more. Where it's up to us to decide what's important. In other words, what fights I want or don't want.” And so it was on September the 26th, after a very painful decision, that they terminated their pregnancy. Valerie returned home to John and her children. You know as I was preparing to do this story, I came across this part of the Trayner’s information and I was concerned as It provides some controversy. They wanted to tell it because it is part of their journey and I have to say that I greatly admire this couple for doing so. To be placed in that position and have to make that decision is more than I can wrap my head around. So where do I stand on this? I will simply tell you. I hate Batten disease, but I love the families that battle it. In fact it is true that I may love this family a little bit more.
Kayden, with all of that comes with CLN3, is a two man job and Kodie is a typical toddler. John and Valerie would find out that while Kodie doesn’t have Batten disease, he is a carrier. Kayden’s story is still in the process of being told. Some of Bekah’s words come back to mind as I begin to close. When it comes to these stories, she said, “They are all incredible stories of courage, pain, joy, beauty, grief, love and more. All deserve to be told.”
There is no doubt that many, if not all of these, will be experienced by John and Valerie. I am glad that they have the support of the entire Batten community, as well as, that of family and each other. I know that they have mine. They attended their first BDFA (Batten Disease Family Association) conference in November of 2016 and as I write this, they are at their second. Valerie had this to say about the first time that they attended, “we made some lovely friends and it was a relief to be around people who understood or “got it”. Although we walked away feeling like we had been hit by a bus, we knew we needed the information. We needed to see fully what this monster would do to our warrior.” The Trayners have been told that Kayden is unique in that he was the first to be diagnosed on the behavior side of Battens. Kayden has not experienced any seizures but his dementia is a constant concern. They battle with Kayden’s poor sleeping patterns and behavior issues. Kayden is doll of a boy. He is a hero and a rockstar to me. Valerie says that Kayden still loves dogs and other animals. Of course, he also still loves WWE professional wrestling. His long term memory is fantastic. His mum stated that the last time he was tested on the wrestler’s themes, he got 123 out of 138 correct. Kayden, you put me to shame little man. Kayden started at Braidburn primary school this past summer and it is having a big impact on him. I am so happy to know that Kayden is loved and that he is being cared for. He is so deserving! Best wishes Trayner family. Thank you for sharing your story with me and for helping me to tell it to others!
Blogger and Advocate
“I don’t understand why, when Batten parents reach out to me and tell their child’s story, it always starts out so similar to mine. How their child was so healthy and so active and happy when little. Even a few of the kids have a laugh like Lydia’s that’s so contagious. They were enjoying life and love and family and their child was and is the center of all this goodness. Then major symptoms start to show, and you are told your hopes and dreams will just remain hopes and dreams. There’s all these what ifs and fears and nightmares, and any new possible sign or symptom of regression sends such a terrible feeling straight into your heart.”
I was at lunch in the middle of the workday, and was reading through the first email that was sent to me by a Batten mom. I had to stop because I found myself becoming overwhelmed by what I was reading. That is not out of the ordinary these days but it hasn’t always been that way. Sure there were things in the past that brought tears to my eyes. My father-in-law’s funeral that finished with Amazing Grace being played on the bagpipes is one example. That got to me. Especially as the hymn ended and the cemetery became silent and still. Yes, I guess I have always been a little on the sensitive side but not to this extent. Our friend Pamela Cameron lost her grandson Casen to Batten Disease and she still stays involved in the Batten community. Pam said that she never use to cry but now, she sheds tears for every child lost to Batten Disease. For me it seems to happen with every new story that I write.
There is this young mother that I have grown to respect a great deal. She has told me that anyone would have done what she is doing. People should know better than to tell me something like that and I have to disagree. She is not an ordinary mother and what she is doing is extraordinary to me. In fact, some would say that she possesses a rare type of character. Being a single mom is difficult enough in any day and age. To try to live on your own and maintain a home environment for your child while providing for their needs is a most difficult thing all by itself. What if on top of that, your child has a rare disease? What if the only way to get that child the treatment that they need requires you to pick up and move away from your family. You have to be driven by love. I have said it before and I will say it again. There is no love like a mother’s love and there is no love like the one which exists between a mother and her daughter.
What is it about this particular journey that has my attention? Why Batten Disease? There are so many other rare diseases that I could focus on. Perhaps one day. What about some of the forms of pediatric cancer that plague children. They are all worthy of increased attention. Certainly more needs to be done in the way of funding and research. When a parent finally receives the diagnosis of Batten Disease, it generally comes after an exhaustive search for answers. Sometimes they have had to deal with a number of different doctors to get answers and it takes a long time to get through the maze. Once the cause is determined, the news brings devastation. It is a struggle that I can in no way relate to. Afterwords, what is demonstrated in the way of very determined love is so profound to me. The plain truth is that I just feel drawn to you as families. I have a severe amount of appreciation for all that you go through. Do you find that to be a little creepy? I’m sorry, but I am pretty certain that I am not the only person that feels this way. I love having the opportunity to tell these stories as each one affects me in a very profound way. This next one perhaps more than any so far. Perhaps you’ll see why!
Lydia Rose would make her appearance into this world in the ordinary way but to this young mother and her family, it would be no ordinary event. I am certain that she was not the only baby that was born in the city of Chattanooga on the day of August the 27th, 2011. She was however, the most beautiful. That was the opinion of her family and you won’t get an argument from me on that point. She had all her fingers and toes and she was covered in brand new baby skin. She was Alicia’s princess from the very first sight of her. As she held little Lydia Rose, Alicia pondered the possibilities of what life would entail for her beautiful little baby girl. All the events that enter a young girl’s life were before her in waiting. As life would have it Alicia would begin parenting as a single mother. She, however, had very loving parents who supported her from the beginning as Lydia Rose entered their lives. Grandpa Wayne and Grandma Lisa were there, and not just there. They adored little Lydia from the very start.
Lilly, as she would come to be known, was the center of the families world and she most certainly had their attention. As she continued to grow, so did the entire families love and affection for her. If you had to describe her in only one word that word would be “cute”. If you were to add to that a little bit, you might say that she was “total cuteness”. When she learned how to talk the sweetest things came out of her little mouth. One example is how she would pronounce her colors. For Lilly, yellow wasn’t yellow. It was Lellow! As she continue to reach new milestones, her vocabulary increased. She would say the cutest things, and as such she had special names for her grandparents. Those names would be Granny and Papaw! Granny and Papaw loved their Lilly as they still do today. There is the saying concerning grandparents and their grandkids. Spoil them and send them home. Well there was a lot of that going on as their house was Lydia’s home. Lisa recalled to me the first time that she was trusted by her daughter to watch Lydia so that mom could go out. Granny was instructed to not hold her granddaughter the entire time. She however, could not help herself as the bond was too strong. She never put Lilly down. You’re so busted Granny! As far as Lydia’s Papaw was concerned, his Princess Lilly was and still is his ray of sunshine on a cloudy day!
Granny Lisa would tell me that Lydia was just like her momma Alicia when she was young. Lilly was adventurous and always on the go! She loved to run and especially loved to swing. She kept the family busy as she had so many activities that brought her joy. Painting and singing, as she loved music. Simple things like stacking blocks or feeding the ducks. What child doesn’t love feeding ducks? Running and jumping, hopping and climbing. Princess Lilly was on the move. She loved to blow bubbles and to draw with chalk, but maybe her most favorite thing was playing with play doh. Her Granny was careful to keep the house stocked with play doh because you can never have too much of that around. Not when Lydia is the center of your attention! Of course Mickey and Minnie were and still are her favorite Disney characters. Granny and her had a game that they called pink ball blue ball. They would spend hours playing together at Wayne and Lisa’s house. Granny and Princess Lilly played kick the ball down the hallway and Lilly would laugh and giggle when the ball hit the wall or ceiling. Um, Granny, I thought you weren’t supposed to kick balls in the house. Hmmm!
Lydia loves spending time with her family. One of her favorite people on the planet is her cousin Julie. According to Granny, Lydia thinks that Julie “hung the moon!” I take that to mean that she has her cousin Julie way up high on her list of favorite people. Lydia loved her early childhood walks with her cousin and Granny. She hadn’t started walking yet, and so she would kick back in her stroller enjoying the ride with her feet on the tray. These are the kinds of things that grannies remember and cherish their entire lives. As Lydia learned to walk, she was constantly on the go! She loved Moon the cat! Poor Moon recently went the way of feline but when she was still with us Lilly would often ask for Moon Moon!
Lisa says that she would find Moon and bring her to Lydia for a few minutes of torture after which Moon would run off until the next time. That sounds so familiar to me for some reason.
Lydia’s laugh is infectious and that is one of the many things that her family loves about her. That laugh and all the giggling! You could only imagine that all this activity would tucker Granny out and she would just be exhausted. As she put Lilly to bed and tried to get there herself, their princess would get a burst of energy. That’s where Papaw would come in. Lisa said that Papaw Wayne would stay with the two of them tickling Lilly for at least an hour. As she was tickled by her Papaw she would kick him and he would pretend to be hurt and act like he was going to toss her off of the bed. That would finally wear her out and then it was time for bed! Whew!
There is nothing as treasured as the purity and innocence of a young child. The memories of that stage of life never go away. They are only built upon by the memories that are formed as a result of watching your child grow into adulthood. All while enjoying all the various stages of growth. Are you able to get a picture of what this little person means to this family? I bet that you are. After all, we have all experienced the joy of having little people in our midst. Watching all the adorable things that they do. The questions that they ask, the giggles and innocent laughter are all things that are treasured for all of time. Alicia, or Ally as her friends call her, was and is an independent person. As such, her and Lydia would live outside the home while Ally worked at establishing herself in a career. They would, however always spend time at Granny and Papaw’s house.
To say that Ally loves her daughter is an understatement. The dreams that she had for her young daughter were without limit. Starting out as a single parent is indeed a challenge, but with the moral support of a loving family, that can most always be overcome. Getting to know Ally, I have come to realize that there are not too many things that she wouldn’t be able to accomplish. This because of her level of motivation and drive. She seems like a very intelligent and articulate individual. She is someone that could meet the challenges that lay ahead and there is no reason that the dreams that she had for Lilly could not be realized. Whether single or married one day, Ally could visualize Lilly achieving all the things that lay in wait for her. Grammar school through High School and into college. Sports, or Cheerleading, High School dances and Prom Night. What parent who loves their child wouldn’t be thinking ahead at least just a little bit? As time would continue, however, events would take place that would be a cause for real concern with Lilly. This would change everything for Ally and her family.
As early as one and a half years old Ally saw things in her daughter that may have been precursors to a disease that at the time she knew nothing about. Little Lydia was having sleep issues. She was waking early and staying awake until very late on many occasions. Ally said that she would often wake up crying and would be inconsolable. She went on to say that it seemed liked Lydia’s whole body would stiffen if she was touched. This made her wonder if her daughter was in pain. Ally was also noticing things in relationship to Lydia’s speech. She could not pronounce several letters or speak in sentences with over three or four words back to back. When Ally brought it up to the pediatrician, she was told that this was normal and not to worry about it because Lydia was meeting her other milestones. Gradually her speech improved but this, however, would not be the end of it.
Ally remembers that it was on May 22, 2015 that Lydia had her first Grand Mal seizure. This an hour after she sent her to daycare on the day care bus. She would of course take Lydia to the hospital but was advised that one seizure does not mean that she would have another. This however, was not to be the case. Lydia would have her second Grand Mal on June the 1st of 2015. Epilepsy was the early diagnoses after testing was performed. The drug Keppra was prescribed for Lydia but it was not effective. Even with the maximum dosage, Lydia was having one Grand Mal seizure per month. Alicia stated that by August of the same year Lydia had developed noticeable, uncontrollable movements, stuttering of speech, plus sudden and complete muscle loss. The Grand Mal seizures would continue through December. Lydia began to develop abnormal movements and was falling frequently. Ally stated that at the time, she had no idea what was going on and neither did the Neurologists. Was it a side effect from medication or a new type of seizure? Ally had not yet received the actual diagnosis for her daughter and was going under the assumption that Lydia had Epilepsy. She looked at what the side effects are for the current medication and compared them to what she was seeing in Lydia. She felt that she may have the answer. The procedure for handling seizure disorders in general is to add more and or different medications until the seizures are under control. Topamax in capsule form was tried next. The doctor recommended that the powder be sprinkled on Lydia’s food even though Ally explained that her daughter was having issues with speaking, swallowing, and eating in general. This not to mention that the medication would not dissolve on the food. Lydia was receiving next to none of the medication.
Nothing was working for relieving little Lydia’s of her seizures. According to Ally, Lydia continued to have movements that were out of control and dangerous. She would have a body part jerking quickly every three to five minutes or she was dropping to the ground. Is there any way that we could possibly imagine what it was like for this young mother at that point in time? What about sweet Lydia? What was all of this like for her? What was the damage she was seeing in her daughter as a result of all the seizures. She said that eventually, things would build up until Lydia had another Grand Mal seizure. The totality of what all this was doing to Lydia was so disturbing to this momma. In her own words, “She was bruised, scraped, and cut up by now, but the hit her spirit took from constant physical limitations, her own little person minded misunderstandings of her condition, and mistreatment she received by less than par local daycares is what I saw hurt her the most. My happy child thought her seizures were people she cared about pushing her down, and she made it clear she felt this way, and that her feelings were hurt worse than the trauma her body was experiencing.”
I can only imagine the concern that Ally had for her daughter at that point. What about Granny, Pappaw, and the rest of the family? This little person had become such an integral part of the family and the center of their world. This little person brought so much joy to their home and now all of a sudden her health had declined and things were out of control. They did not have answers for what was going on. Ally’s own anxiety was growing to the point that she reached out for help. The trauma all of this was creating was startling:
“I pleaded for help, because Lydia was beginning to be covered in bruises and the daycare was not comfortable with what she was going through either. She was losing coordination, sleep, and the ability to even walk without dropping flat on the ground. She still suffered one grand mal a month. She seemed to have no control over her body anymore. She had potty accidents, when before she began having seizures she was potty trained. I needed help for Lydia because nothing was working. We rode public transportation for two years. Even though she used to walk up the bus steps and wave to the driver, and even sing her abc's on the bus, she was now at the point where she couldn't walk without holding my hand. She was too tired to sing, and was weary from falling down all the time.” It would soon be determined that sweet little Lydia was experiencing Myoclonic, Drop, and Absence seizures. She would at one point have been through several different medications in the search of relief and eventually she would be on a cocktail of medications.
Alicia had seen enough and needed answers. Obviously, there was more going on than just Epilepsy and she had reached her limit. She commented in an email what she was feeling at the time, ”I repeatedly and frantically called the neurologist til we were scheduled to go to Vanderbilt on October 22nd, 2015 for a better understanding of Lydia's sudden change in movements.” It was on that day that little Lydia was checked into Monroe’s Children’s Hospital for a two to three day video EEG. Ally stated that Lydia had to stay in the hospital long enough for the Neurologists to determine what kind of seizure activity she was experiencing. This would also allow time needed to perform any other testing that would help them determine the root cause of the seizures.
In the course of trying to determine what was going on with Lydia it was thought that she may have what is called Doose Syndrome. Doose Syndrome is also known as Myoclonic Astatic Epilepsy. This syndrome affects people in their early childhood and the disorder is characterized by difficult to control generalized seizures. The types of seizures that Lydia was experiencing, i.e., Drop and Absence seizures, are included in that category. Ally described her feelings concerning that possibility, as well as, learning what was causing the abnormal movements seen in her daughter, “...my heart broke again that day when reading about Doose, and learning that her abnormal movements were due to myoclonic, drop, and absence seizures that had begun to be noticeable after her 2nd grand mal in June.” Doose would eventually be ruled out much to Ally’s relief, however the results of the EEG were revealing. According to Ally, Lydia's test showed seizure activity all over her brain. It even included nocturnal seizure activity. She would describe it in such a way as to say that her daughter’s brain was like a storm. The drug Depakote was added and other medication adjustments were made. This helped for almost two months. The seizures were under control and the abnormal movements had stopped. Alicia was concerned about the side effects of all the medications that Lydia was on at this point, but she had to have been somewhat satisfied by the improvements she was seeing. This however, was temporary.
Two weeks before Christmas, the seizures would return. This time however, they returned twice as bad. Whatever this monster was, it was relentless. Can you imagine what this family was experiencing during this holiday season? The level of anxiety that was being experienced by Ally? Ally said that further testing was declined by the insurance company for, quote, “lack of importance”. The only option that was made available was to add another medication, one that is named Onfi. Again, Ally not only had the concern for what the seizures were doing to her daughter’s health. She was also concerned about the effects that the cocktail of pharmaceuticals was having on her daughter’s little 37 pound body. This is what Ally had to say, “…she suffered another grand mal, and I watched all four seizure types return. My little girl was back on the floor after getting knocked down again by another drop seizure.” Can you imagine what this family was experiencing during this holiday season? The level of anxiety that was being experienced by Ally?
Alicia said that it was at that point, while being agitated and frantic, that she requested more testing. She went on to say that Lydia had labs taken for genetic testing. Tests that would look for any mutations that may be causing all the seizures. Fearfully, she had no idea what was happening to Lydia. Around the time that the results were to be given, Ally received a letter from the insurance company. Payment for the testing was declined. What? Words like “experimental” and phrases such as “not helpful to assist in her treatment” were used. Wasn’t she going through enough at that point? To have that come from the insurance company at that time seems so cold and inhumane. She said that she was floored by the wording in the letter. Who could not understand how she must have felt at that time? More phone calls were made and it was determined that they would return to Nashville to have genetic tests that the hospital’s program would pay for. The geneRx test was performed, however they would have to wait three months to receive the results.
While waiting for the results, Lydia was regressing. She began to wear a helmet for her safety and she had to wear pull-ups due to accidents. Ally kept Lydia close by her side for fear of her getting hurt while having a seizure. Her speech was slurred and she was stuttering. She no longer sang songs and was barely able to use a spoon to feed herself. Lydia was Ally’s baby girl. Her reason, and the center of her world. The months that it was taking to get a diagnosis had to have been so difficult. To witness the regression was more than what most any person her age would normally encounter. Ally would spend many nights awake due to Lydia’s broken sleeping patterns. She would observe her daughter, watching her body shake and her eyes flutter. Her words concerning those occurrences are so moving to me as I try to visualize those moments in the hours of the night. Her and Lydia together. She commented on little Lydia as she would awaken, “In the mornings, her body was shaky and unstable, but she continued smiling and trying to communicate, and I kept up hope that the test would give us answers and she would eventually be ok. We went to meetings to develop an IEP, for which she did qualify for, and we tried to adjust to all the changes happening all at once, it seemed.” I am heartbroken by this comment as I know what would soon lie ahead for this young momma and her baby girl. For her entire family for that matter.
I have been doing these stories for close to a year now and I have been moved by each individual one. Each story conveys the feelings that are experienced by the families as the diagnoses is found out. Almost all of them express what is the depth of despondency, grief, and sometimes rage that is felt by the parents and family. When you love someone as much as this mom and her family loves their Lydia, their princess Lilly, the emotions displayed are completely understood. These are Alicia’s own words which are honest and telling:
“April 16, 2016. Vanderbilt called and explained they did find a genetic mutation, and we would need to see our local neurologist for the test results. After my insisting, I learned the mutation was in the Cln2 Gene. Both copies were mutated. The TPP1 enzyme was not being produced. I researched and found Batten Disease, CLN2-Late Infantile. I read the words NO CURE, NOT ENOUGH FUNDING FOR RESEARCH, CHILDHOOD DEMENTIA and EARLY DEATH.That was the day I will never forget because the world stood still. My heart and soul was forever changed and so damaged, and Lydia had no idea what I had just learned. I couldn't face her for hours. I told my family and I watched my strong Dad cry, and my mother broke down, and every day after was the same. I quit my job. I was cracking and so broken. I isolated as much as possible. I felt forsaken by God. I cursed him while standing in my kitchen many days with my fists raised to him.”
You know what? God understands the anger! This story doesn’t end here. No not even close. Like the other stories, the parent is overwhelmed with the news that brings devastation and hopelessness. Things then change. I don’t think it is that the feelings of brokenness go away. It is just that added to that comes feelings of resolve towards helping their child battle the monster that is Battens. Ahead are so many sweet memories that come along with the challenges. Such was the case with Ally. Sometimes, it is just time to take action because of love. I don’t mean to wear the phrase out, but “undying love” comes to mind. I have now seen it displayed so often!
This quote was taken from an email that was sent soon after the diagnosis. “Even with such a grim diagnosis we have much to do. She's being referred to have leg braces fitted, Speech, PT, OT therapy, and vision testing. She's already passed her hearing test. I requested a geneticist, and am waiting for them to fit us in.” This young Momma jumped to action out of love for princess Lilly and it is why this young lady has my respect.
Batten Disease is a battle. Just ask the parents. Ally continued to care for her Lydia after receiving the diagnoses. The symptoms that the disease brings to little Lydia are a constant challenge to this mommy and her baby girl. Little Lydia, or Princess Lilly, continues to face the daily struggles with a smile on her little face. She is just so precious to this old blogger!
Lilly would go through spells of crying and yelling, sometimes at a level that was deafening and with her hands clenched. She would go through cycles. Three or four good days and then bad days that lasted about the same amount of time. Emotions would run from high to low for both mommy and her little girl as Lydia would sometimes be inconsolable. Even so, Lydia continued to laugh and display that smile that is just SO darling. Even now, she gives everything that she has to give. Each and everyday. This is testified to by Ally’s comment concerning the character qualities that she sees in her little princess, “Lydia's stubbornness and free spirited nature are beautiful qualities to possess, and most importantly it'll help her to continue to fight. it'll help me continue to fight with and for her.”
The disappointment in this young mom over what has happened is difficult to overlook. She has felt that their entire lives have been ruined by Batten Disease. Her dreams of Lydia becoming a productive member of society have been undermined and achieving the things she had dreamed of for Lydia are in all likelihood never to come about. The following quote is something that sounds so familiar. I had heard the same type of thing come from Sands Macphail when I had blogged about her daughter Caitlind. This concerning the loss that Sands knew would come with her own daughter. Similarly, this is what Ally had to say, “I grieved her losses before they even happened. I grieved the loss of her before she was even gone. I had no idea what my purpose was in life other than to be a mother, Lydia's mom, and now I had no reason to live if she wasn't with me. Still, she needed me and I had to pull myself out of death's grip, to keep fighting for her til the end.” How very brave! This is why I hate Batten Disease but love the families and their little warriors. Just think about it for a minute!
In her search for help with her daughter, Ally found out about an experimental drug trial while on Clinical trials.gov. This, she felt, was their “last hope”. All the while she was witnessing her daughter’s continued decline. Lydia’s variant of Batten Disease is the only one for which this treatment is available. Ally would, of course, apply for the program. In July of 2016, Ally and Lydia would attend the Batten Disease conference that is put on each year by the Batten Disease Support and Research Association (BDSRA). While there, she had the opportunity to talk to representatives from BioMarine. That is the company that supplies the drug that is used in the treatment. A week after the conference Lydia had lost her ability to walk. She hadn’t eaten for a week and wasn’t moving around. This all led Ally to write an impassioned email to the reps at BioMarine. The email was a plea for help. It seemed at the time that she did not have hopes of Lydia being accepted for the next trial that was coming up. Among other things in her plea for help, she talked about Lydia and the other children at the conference, “ I looked into these beautiful children's eyes at the conference in St. Louis and they are the most beautiful children I've ever met. Even the ones who have declined so much are so full of life and smiles. That's my Lydia, too. She was an energizer bunny. Always running, always smiling, and always socializing. She is slowly fading from me. Her adventurous, daring, and free spirit is barely noticeable these days. She's taken to sitting around when she used to run from the time her feet touched the floor in the morning. To think I used to complain about how tiring it was chasing after her. Now I don't have to chase her, and I'm even more tired. I am mentally and physically exhausted from watching her suffer.” That is just a small portion of what I read.
This impassioned mommy said that she felt out of her mind and had written to BioMarine out of anger. In response she received an opportunity to conference over the phone with a couple of the reps from the company. Ally told me that their response to her was compassionate and sweet. How very wonderful is that? A week before Lydia’s 5th Birthday, they received a call stating that the extended trial was open to five children who had CLN2 Batten Disease. They wanted Ally to bring Lydia up to Ohio so that she could be seen by staff members. On August the 29th, two days after her 5th birthday, they were in Ohio getting an eval to see if Lydia qualified. They found out that day that she did and a week later, the shunt was implanted. Two weeks after that, in September of 2016, Lydia had her first infusion.
“Looking back now, and after hearing other rare disease stories from amazing parents, I learned that we had/have more to be thankful for that I didn't even notice!” This from Alicia, better known to her friends as Ally. She is thankful that Lydia’s diagnoses came relatively soon compared to others. Her little warrior princess is in a clinical trial that is available only to kids with CLN2 and along the way she is meeting some very wonderful people.
“Batten's Disease is an absolute living nightmare. It is hell, and it doesn't discriminate against anyone from anywhere. The only good thing about Battens is the people we have met in the same situation and have become long distance family to. This includes the wonderful therapists who actually have passion for their career, and the compassionate Batten's disease specialist and her pro-active staff in Ohio. The uplifting support of the Batten's Disease Research Association, also in Ohio. They have made their presence known from the very beginning, and it is such a light in our darkness.” In fact she refers to some of the people that they have gone on to meet as lifelines. That is in fact, literally true!
This story is still being written. I was chatting with Ally one day in Instant Messenger and I told her that what she was doing for her daughter was wonderful. She is separated by the miles from her family in Tennessee and is by and large alone with her daughter. Yes, I am sure that they have made friends along the way. I know that the people at BDRSA have been a tremendous help and support to her. Her response to me concerning their being in Ohio and undergoing the treatment is that it was not going to save her daughter. That is in all likelihood the truth. We need an actual cure and our hope is that one would be found. You see though, that is what makes the story all the more sweet. This mommy will do anything to help improve her daughter’s quality of life. Anything to relieve her of the symptoms and progression of the disease. If you had seen the amount of information that I had to work with for this blog. If you had seen all of it’s content. You would have the same amount of respect and appreciation for Ally that I do. She is an amazing young lady! I wish them all the best. Granny and Papaw too!
Like the rest of us, Princess Lilly is here for a time. Hopefully a very long time to come! She will impact the lives of this family like none other. She will teach people how to love more deeply. How to surrender and sacrifice. How to show Undying Love! The things that she and others like her teach us will be hopefully passed on to those with whom we make contact. The lessons learned should be passed on. Yes, there will be heartbreak along the way but the memories that are formed will be so sweet that they should carry this mommy and her family through the difficult days. Let that be the case! Ally said that anyone would have done what she is doing. What would you have done? When most young women are shaping their careers or finding true love, Ally has another agenda. Her priorities surround the health and welfare of her daughter. While she says that anybody would do what she has done, I can’t help but to be completely impressed by her.
Dear Lydia, you are so precious. Our heart's desire is that you continue to fight this monster for a long time to come. We want a cure for Batten Disease. Our prayer is that the treatments that you are receiving help to keep you whole. What we hope and pray for more than anything is that a cure is found for all of the approximately 13 to 14 variants of Batten Disease. Until that time there is love that is unparalleled. Lydia, you are so loved. By your mommy, Papaw, and Granny too. I am sure by your entire family and many others for that matter. You know what Lydia? I love you too!
Lydia, I love you!
Blogger and Advocate
I HAVE TO TELL YOU:
What I have to tell you is how completely impressed that I am with Lydia's mom, Alicia Headrick. I was very challenged by doing this particular article because of the volume of information that she provided me. Right from the start, I could see that she is a very intelligent and articulate young lady. Being a single mother away from home combined with being a mom to a daughter that has Batten Disease provides her with a most difficult challenge. It doesn't matter what your financial situation is, married or single. Having a child like Lydia is expensive. A lot of families are able to do fund raisers to help pay for expenses. Ally though, is Lydia's caretaker 24/7 and she doesn't have the time. I don't always ask that people give of their resources in support of a Batten family but in this case I will. Alicia is a very responsible person and will use everything given in the help of her daughter very dilligently. So what I am asking is that people look at the link to her gofundme account that I am providing. Please consider helping. Thanks so much!!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017