“I truly love these beautiful children with every beat of my heart. I am an advocate for those with special needs and I am passionate about these children and their families. I will continue to follow them and I will advocate for them and their families until a cure is found!”
My good friend and
What is it about these kids? Not everyone that is told about children with Batten Disease will show an interest in their plight. Perhaps most will have a casual interest. I suppose many would be sympathetic. I know that I have seen a number of different responses when I tell people about the disease. I also get a mixture of responses when I tell people that I have been writing about the families that battle it. Some will think that what I do is interesting. Others will have a look on their face as if they are questioning why? What could I possibly gain from doing this? To sum it all up, it is about these kids. They do something to you. That is if you are the type to care enough to pay attention.
What does a person mean when they say that they have been changed by following the journey of a Batten child? It is often difficult to put into words the things that are felt by a person. I don’t know if I have done an adequate job of explaining the changes that have taken place in me since the time that I started to write about kids that battle Battens. I have some things to say about it but I thought that it would be nice to get some help with this. I asked my friend Christen Brawley to help me as I felt a little stuck at the time that I started to write this story. Like myself, Christen is the parent to a child with special needs. She, in fact, has two young sons who are autistic. Her life has been changed by caring for her own children but that is not all that has influenced her thinking. Christen would spend much of her childhood with a friend that had a disease named Lissencephaly. I will let you Google the condition on your own but I will say that Lissencephaly is most often fatal at a young age. Her friend, Jacinta, was only supposed to live until age two, however she would go on to live to the age of twenty-seven. Christen spent much of her young life helping in her friend’s care. Their time together taught Christen much about compassion and how to listen with your heart as her friend was mostly non-verbal. Words are not always needed to communicate. My point in sharing these things with you is that it was natural for Christen to fall in love with Batten children as she discovered her first Batten princess.
This would happen as she was seeking support for herself in raising her children. Her search for help included groups and pages on Facebook and that is when she would become aware. Christen would find and start to follow this little princess of a girl and it is amazing to read how her life was impacted by finding her. Here is what she had to say, “I was instantly drawn to this beautiful child. I could not get enough of her. Her beauty and her inner strength literally brought tears to my eyes the first time I saw her. I followed her everyday after that, cheering her on as she so courageously fought against the Batten monster. Relishing in the joys that she found in every single day. Her smile was bright and beautiful and it is forever etched into my consciousness. My first Batten girl. Oh, how special she was!” Christen would continue to speak about this princess and she would share her reaction when this much loved child was taken by the disease. Christen said, “I remember when she was making her transition into heaven. I cried reading every update. I was surprised at how emotional I became over a child I had never met. The sadness that engulfed me when she gained her wings was almost unbearable. All I could think about was how this beautiful girl had changed me. I had to know more. I had to see more of these gorgeous children.”
And so, Christen would continue to look for other kids to follow. She absolutely adores these children. The means by which she first became aware would be different than with myself but the result would be the same. Her first Batten princess would also be the one who made me aware and I have never been the same since that time. The way that I look at life and my position on this planet has changed. For example, I no longer draw my identity from what I do for a living. Following sport teams is just a source of entertainment when I have the time. I no longer sit and yell at the television while watching the news. I don’t do politically angry posts on Facebook any longer. I have better things to do with my time now. It would eventually be through these children that I would learn that I love to write and writing is what I will do until I am no longer able to do so. It has become my way to honor these children and also a means by which I can be their advocate.
Just like anyone else, I suppose that I have always noticed children when they are around but I now look at them more intently. I study the quality of their innocence and the contribution that they make. The joy that is expressed by them is without equal. Their lives are most often uninhibited by the stresses that are part of our everyday existence. They just enjoy their little lives so much as they absorb new information. Children sure have their ways of showing us that they are part of the human race but they also show us a quality of innocence that is unseen in the rest of us. With all this in mind, it is so disheartening when we see a child in distress. Whether it be a disadvantaged child in a third world country or one in a pediatric ward of a hospital that treats cancer, we do not like seeing them suffer.
So again, I ask the question. What is it about these kids? Speaking specifically now about children with Batten Disease. I think that it is their plight in combination with the qualities that I have mentioned above. Batten Disease is a highly degenerative disorder that is fatal. While there is some room for optimism, we know what the eventual outcome will be. The qualities of a child in combination with what is faced as a result of a disease like Battens just melts us inside. That is if we are the type that cares. Parents of Batten children are realists. They cling to the hope that a cure or treatment will be found as they also fight for their kids in a most unselfish manner. Their display of love and strong character is often the subject of what I write. They are strong for their children because they have to be. My level of respect and admiration for these parents is just off the chart. Christen sees the same things I do and that is why I have featured her in my introduction to my next story.
Kayla Neveri is a mom to a most beautiful little Batten princess. We were friends on Facebook previous to the Batten conference in Nashville but we were able to meet in person at that time. She expressed an interest in me writing about her daughter who is named Breanna and you just know that I would not pass up the opportunity to do so. Christen Brawley had not yet seen Breanna’s picture on Facebook until I posted it just prior to starting this next story. Upon seeing Breanna’s picture for the first time, she referred to Bree as a “REAL LIFE DOLL” (upper case added for emphasis). I couldn’t agree with her more on this because that is what Breanna is. She is Kayla’s Perfect Princess and this is her story.
It was in the midst of the years 2008 and 2009 that Scott Neveri and Kayla Green met while while working as security guards at a factory. As is sometimes the case, love stories begin at work. That is where Scott and Kayla’s story would start. They met after Kayla had been on the job for about six months. First they were just co-workers and then they would become friends. The friendship would lead to an attraction towards one another and they began to date. Scott and Kayla would really hit it off and found that they had like ideas and desires for the future. They would date for about a year and a half and then, Scott would ask Kayla to marry him. That would be in the beginning of 2010. Kayla would, of course, say yes and plans would be made. They had already been discussing a Birthday trip to Las Vegas when the subject of marriage came up and this would lead to an idea. Why not get married there? Is was cost effective for them to do it that way, and so, they did things Las Vegas style. Kayla would tell me that they would marry on May the 8th of 2010. With them was a maid of honor and a best man. Close friends and family attended too. Everything was perfect and they became man and wife!
Scott and Kayla were happy and enjoying their new life together. They discussed what they wanted for their future and like most couples, that included children. The couple would enjoy their time together for about six months and then they decided that it was time to start their family. Their plans would become a reality as they welcomed their first little bundle into the world. That bundle was a boy and they would name him Garrison. The little guy made his appearance on October the 4th of 2011 and he would go from adorable to handsome in no time at all. Scott and Kayla were oh, so happy and life was good! It wouldn’t be long after little Garrison came along that they decided he would need a sibling to grow with. Tried as they might, Kayla was not getting pregnant as easily the second time around. There were a lot of negative pregnancy tests and they would eventually decide to take a break from trying. In the meantime, they had their little man to enjoy along with enjoying one another.
It goes without saying that difficult times can come into everyone’s life. Kayla would experience a time like this, even as she enjoyed the experience of being a new mom. Her own mother, Brenda Lee Ruhland, would pass away at the young age of forty-four. How devastating this must have been. This happened in April of 2013. Brenda had oral cancer that quickly became bone cancer and it spread throughout. Not many things can be more difficult but Kayla and her family would persevere. They still desired to have a little brother or sister for Garrison and this would soon happen. It was a month after her mother’s passing that she did another pregnancy test. Kayla felt certain that she was pregnant and her suspicions were confirmed. She was going to have another baby! The sadness over losing her mother must have been eased a tiny bit by the joy of knowing that another baby was on the way. Once it was determined that they were going to have a girl, Scott and Kayla decided on the name Breanna Lee. The name was chosen in memory of Kayla’s mother. How very fitting!
Scott and Kayla were excited. They were going to have both a boy and a girl. How perfect is that! The pregnancy would go smoothly up until near the end of term but then a problem would develop. Little Breanna was due to make her entrance on the 27th of January in 2014 but she would not be able to wait until then. Kayla had gone to the doctor for a routine appointment and once there, it was determined that her blood pressure was very high. She had developed Preeclampsia. As was the case with Kayla, this condition develops in the later part of a woman’s pregnancy. It can be very serious if it goes undetected. And so, it was on January the 15th that the doctors would take action. Little Breanna would be delivered just as her big brother had been, by cesarean section. Breanna Lee was, oh, so perfect in appearance! She had all her fingers and toes and she was covered in brand new baby skin. Baby Breanna weighed seven pounds and two ounces at birth. She was just beautiful and she was so healthy.
Everything would go well with Breanna as she made her appearance but it didn’t go as well for Kayla. As the medical staff opened her up to deliver Breanna, they noted that some of Kayla’s organs had been fused together. Kayla said that it was a scary moment for everyone. This had to be fixed and so she would be put under in order to correct the issue. Her opportunity to hold her perfect princess was delayed until the time in which she would awake. Either way, I am sure that her reaction would have been the same. Intense love at first sight! Here is how she put it to me, “After I was fixed up I finally was able to hold my baby girl. I had no clue that the love of a parent grew bigger when it came to more kids. I was worried about how I was going to stretch the love I had for Garrison to Breanna, but quickly I realized my love would keep growing. Our family was finally complete.” Things at that point, must have been wonderful for this young family. There was a lot of love in the air as they welcomed Breanna into the world. A mom and a dad that loved each other and now, a boy plus a girl. How sweet is that! The future looked to be incredibly bright and who would argue that it was not?
Baby Breanna was not only beautiful. She was also very strong and quick to pick up new skills. Kayla said that Bree took her first steps when she was a little over nine months old. She was walking, running, and climbing by ten months of age. It was at ten months that Breanna would give her mom a little scare while also providing one of the cutest memories that you will ever hear of. Here is what Kayla told me about it, “When she was 10 months old, Breanna went ‘missing’ in the house. I was running around like a madman because I couldn’t find her. That’s when I heard a giggle come out of the bathroom. I found her standing on the tank of the toilet hiding behind the hand towel which was hanging above. That’s when I realized I had a Breannasaurus on hand.” Someone that is as big as a hand towel was already showing off her little personality and that little person inside was as sweet as could be. Brother Garrison, in the meantime, was growing into a great big bother. He loved his little sister and as Breanna grew, so did their love for one another. I am certain that the house was filled with laughter and innocent fun. That is what children do. They fill the house with fun while making priceless memories for their parents.
Breanna’s development was right on track. In fact, she was always ahead of other children her age. There was, however, something that Breanna was doing that got Kayla’s attention. It would happen when little Bree would fall. Kayla would notice a weird kind of leg jerk or twitch whenever Breanna would fall. It started to happen as soon as she learned to walk. It only happened a handful of times the first year of walking and it would only last for a second. Moms are amazing at picking things up that go unseen by others and such was the case with Kayla. She was the only one that would notice this as it happened. Kayla said that as Breanna turned two she was noticing that it was happening more. She tried to point it out to friends, family, and the pediatrician. Everyone thought that it was the startle of falling that was causing it. Whatever the reason, Kayla wasn’t worried because Breanna was developing as a normal toddler would. She was even ahead of schedule. Life would go on and Breanna was getting cuter by the day. Kayla continued to observe her princess as her development continued. As Breanna was approaching three years old, Kayla would notice something else. Breanna’s vocabulary was not as large as some of the kids. Then again, it was at the same level as some of the others.
Still, there were the leg twitches and the number was increasing with Breanna’s age. This was starting to cause Kayla to really become concerned. She was worried at this point. Finally, a cousin had seen the twitching as it happen when Breanna fell. That first sighting, according to Kayla, seemed to have a “snowball effect”. More people started to see it and as Kayla would put it, she no longer felt crazy! Kayla finally felt like she had something that she could take to the doctor in the way of a concern to be talked about. Before that though, a development would take place that would indicate that Breanna was beginning a journey. This would be a journey that no one would expect her to go on. That, because it was one that nobody knew existed. The journey that is Batten Disease. Concerning her and her family, Kayla would put it to me like this, “I had no clue what was going to hit us.”
Kayla remembers the date. It was the 22nd of March in 2017. An event would take place that would indicate what the future held for little Breanna and her family. Garrison had stayed home that day. He was sick with the stomach flu which included a fever. Breanna, who at that point had turned three years old in January, had caught the bug that evening. Kayla said that Breanna had a slight temperature of 100.8 degrees and she had been throwing up. Kayla, being an wonderful mom, was comforting Breanna by snuggling with her as she held her daughter on her chest. Little Bree was watching a movie on Kayla’s phone and had started to whine. She would do this when the movie was interrupted by another app that was opening on Kayla’s phone. I’ll quote Kayla directly here as she explains what would happen next, “So I looked at the phone to fix it and nothing was wrong with it. I started talking to her to calm her down because she had whined again. That’s when I looked at her. Her eyes were rolled completely backwards. She was unresponsive.” How scary this must have been for Kayla. She called out to Scott who came flying into the room to see what was happening. They thought that little Bree was maybe choking or experiencing cardiac arrest. This, as she stopped breathing and her face started to turn a bluish color. Scott then began CPR as Kayla called for help. The couple realized that Breanna was experiencing a seizure as she started to twitch after receiving CPR. She would seize for about twenty minutes and had stopped by the time that the ambulance arrived at the emergency room. As is the norm, the family would be at the emergency room for a couple of hours and as Kayla would put it little Bree would return to her normal “Breannasaurus” self. The medical staff called the event a febrile seizure, attributing it to the low grade fever that Breanna was experiencing with the flu.
Speaking of a “snowball effect”, this would just be the beginning of what this family would experience before an answer was found. The next occurrence would take place a week later as Breanna and Garrison were watching a movie in Kayla’s bedroom. Kayla heard a loud bang and went to see what was taking place. It would be better if I let her speak for herself. Here is what Kayla had to say, “That’s when I heard a loud bang and went into the room. Garrison said Breanna was climbing on a box and fell off. As I picked her up she went limp again and became unresponsive like the week prior. I called 911. By the time rescue arrived Breanna was 100 percent fine. She was telling them to leave her alone. She was running around the house like a nut. I felt nuts.”
You can tell from Kayla’s comments that this all had to weigh on her and Scott as things continued to develop. Still, they were just at the beginning of things. Kayla skipped taking Breanna to the ER when this took place but she took her to the pediatrician a couple of days later. While there, she mentioned the seizures and also the leg spasms. Upon hearing this, the doctor decided that little Bree needed to see a neurologist. However, another incident would take place before they could get to that appointment and it would happen two weeks after the first incident. Breanna had another long seizure and she was taken to the ER by ambulance. This all had to be part of what was becoming traumatic experience. What was taking place with little Bree, the princess of the family? Whatever it was that was going on was very serious. The neurologist would come to see Breanna while the family was at the hospital. She ordered an EEG, an MRI, as well as, other tests. Kayla said that when all was said and done, it was determined that Breanna had epilepsy and she was started on a seizure medication. This all seems too familiar to me after doing so many of these stories. I genuinely feel for each family that travels down this road. We are after all, talking about their babies.
It was after the third seizure that the leg twitching would become more frequent than before. Soon after that, Breanna was falling backwards and her body would twitch as she did. This would be a difficult thing for any mom to observe. Sometimes it was only a limb that would twitch and other times it was her entire body. Kayla said that the twitching would last anywhere from one to three seconds. The number of times that this would begin to happen would be most alarming. Breanna would do this at least one hundred times a day. Some days, it was more than that. Oh, my gosh!
It was between April and May of 2017 that more would transpire. The constant seizing would eventually lead to Breanna regressing in her level of function. A little girl that was at one time so quick to learn new things, was now regressing. One important example concerned the rock wall that the kid’s grandfather had built in the backyard next to the swing set. Breanna had, in fact, been the first child to learn how to use the wall. The weather had improved and the yard had dried out, so Kayla allowed the kids to go out and play. According to Kayla, Breanna tried to climb the wall but couldn’t. Here is how she put it to me, “I let the kids go play. Breanna tried her best to climb that wall and she couldn’t do it. It was as if she forgot what to do at first, then figured out the concept of it but it was like her body couldn’t do what her mind wanted. That’s when I knew something terrible was wrong. After that, I called her neurologist and she also agreed.”
As one might expect, the initial diagnosis of epilepsy would eventually prove to be too general for what was going on with Breanna. There had to be more to this and much to the family’s despair, they would one day find that to be the truth. Breanna would be referred to Milwaukee Children’s Hospital. Scott and Kayla’s princess would be there for quite a few days as several tests were performed, one of which was a 48 hour MRI. Kayla would tell me of a conversation that she overheard out in the hallway as this was all going on. A group of doctors were discussing which conditions they should be testing for and apparently, one of those was Batten Disease. Even so, the family would leave the hospital with no concrete answers as to what was going on with little Bree. Here is what Kayla had to say about it, “After that hospital stay, the doctors were at a loss. She still was diagnosed with epilepsy but the reason was unknown. I was told by one doctor ‘If it were serious it would have shown up by now’. Those words haunt me to this day. This was just the start of Breanna’s Batten journey.” And in fact, much more would happen. Breanna would continue to regress in her development skills and this had to be most concerning to those that love her.
Kayla said that eventually, Breanna’s speech was no longer at the level that was held by other kids her age. What was also very alarming was the fact that she had no fear of danger. She would go as far as to do things that could kill her. This included no fear of heights, water, or road traffic. The hospital visits would continue in abundance at this time. This would include tests and blood work. Near the end of 2017, genetic testing was recommended. Kayla said that four to five different doctors had requested that the testing be done for Breanna but this was declined by the family’s insurance company. She would go on to say that it was finally the genetics lab that did the hard work in getting the approval. On Thanksgiving of 2017 Breanna would have another large seizure while Kayla was home alone with the children. Regardless of what was causing the seizures, Kayla had become experience at handling them. Mr. Garrison also knew how to lend a hand. This family, however, really needed an answer as to what was going on and eventually, the answer would come. It was also that November that Breanna had blood drawn to be tested by the genetics lab. It would be just before Christmas of 2017 that the lab would contact the family because they wanted Scott and Kayla’s blood to be tested as well. Batten Disease is confirmed in a child when both parents are found to be carriers of the same defective gene.
They both reported to the genetics office for the blood draw and Kayla recalls what took place, “It was just before Christmas of 2017 that Scott and I were called into the genetics office and they had told us that they needed to test both Scott and I to confirm diagnosis. Scott didn’t want to know what the diagnosis could be until it was confirmed. I needed to know, so they had him leave the room while they told me the name. Late infantile Batten Disease is what they told me could be Breanna’s diagnosis if Scott and I are both carriers. I had never heard of it before so the second she left the room I googled it. I was in instant shock and crying. I didn’t expect to read what was written. But quickly I wiped the fear off my face because my husband was going to enter the room soon.” Kayla would not waste any time after that. She started reading about the disease and she would even find the BDSRA Facebook group while online. There, she started reading the stories of families who had children with the disease. Depression hit her as she already felt that she knew the truth. Kayla knew deep down inside that Breanna had Batten Disease.
Kayla had all of this information bottled up inside of her and it was more than she could bare alone. She decided to reach out to a few close family members for support. It was also just after Christmas that she would finally inform Scott as to what the diagnosis could possibly be. You see, Breanna is Kayla’s perfect princess but to her big strong daddy, Bree is his little peanut. As the New Year came, so did the knowledge that would bring the answer that was expected. It was January the 3rd of 2018 (12 days before Breanna’s Birthday) and Kayla was out grocery shopping for the family. She received a call from the genetics lab that she knew would be important. The lady at the lab asked Kayla if she was somewhere safe and free to talk. She could wait no longer, so Kayla told her that she was. I will let Kayla take it from here, “That’s when she informed me that our results came back. Scotty and I were both carriers and Breanna had Late Infantile Batten Disease (CLN2). In a state of shock, I finished our conversation which I no longer remember much of. I finished my grocery shopping and went to my car and cried. The details are kind of blurry as to how things happened but once I was done crying, I went home to talk to my husband and tell him the things I had been informed of. Since I had time to process and learn about this disease it wasn’t a shock in the way it was the first time I looked it up. But, it was the fact it was confirmed. My baby girl had this monster in her and it would take away everything about her before taking her away from this world. This, before her teenage years and I couldn’t save her.”
It seems like the initial space in time after receiving the diagnosis is always the worst part of the the beginning for Batten parents. That is what it was like for Kayla. There was, however, help on the way and it would come quickly. Here is more of what she had to say, “I felt lost. I had a gaping hole in my heart and I didn’t know how to fix it. So, a couple days after the diagnosis I finally had the courage to reach out on the BDSRA Facebook page for help. I was overwhelmed with love, support, and help. I now have a new family in the Batten community that I’m grateful was there in one of my most vulnerable moments. They helped pick up some the pieces and fill some of that gaping hole.”
The importance of the help that is available for these families through the Batten Disease Support and Research Association (BDSRA) and through other families via social media cannot be over emphasize. Compared to many, Kayla’s search for answers wasn’t as traumatic as it could have been. The speed at which she received help was critically important (I will explain further in a moment). Kayla said that most of the doctors that she has met have never heard of Batten Disease. Some knew the name but not the details and many used Google to learn more. In the case of the genetics department, they knew the name and had knowledge of the disease but they didn’t know where to direct the family after the diagnosis was given. It does seem that they did a fantastic job of helping this family get the answer they sought in a timely manner. Well done! Kayla would also say that she has found those in the medical community to be most sympathetic and sensitive after being filled in on the details. One look at little Bree is all it takes!
Again, Kayla found the BDSRA Facebook group something to be very grateful for. If not for this group of people the search for help could have been long and traumatic. She said that her plea for help was handled very quickly. Two couples that she was quick to mention were Allen and Vanessa Severance and Tracy and Jennifer VanHoutan. Both families are fantastic ambassadors within the Batten community. They are largely responsible for the speed at which the Neveri family would learn about a life changing treatment and a physician named Dr. Berry-Kravis at Rush University Medical Center in Chicago. Most people that follow Batten families know of the enzyme replacement therapy that is available for kids that have the CLN2 variant. It uses a drug that takes the place of a missing enzyme in the child’s brain and the trial has been very successful. This gives the child the ability to live a much more ‘normal’ life as it slows the progression of the disease in a most dramatic fashion. These little people are so amazing to me. Breanna had her 23rd treatment on December the 5th of this year and she is rocking the house with them. Little Bree’s port to her brain was put into place on January the 3rd of 2018 and her first treatment took place shortly thereafter. The entire process would actually be quick and go smoothly. This, although the days must have crept by for Scott and Kayla. There have of course, been complications along the way as Batten Disease can be so unpredictable in nature. Breanna became ill with a cold in September of this year and as a result, she refused to eat or drink. Her refusal or inability to eat and drink would lead to her getting a feeding tube put in place. This was necessary for her to get the nutrients that she needs even though she still enjoys snack foods like popcorn or chips.
There is no way that Kayla could have predicted what was going to take place in her life but both her and Scott are meeting the challenges. Kayla said that the experience has changed her 100 percent. It has been just shy of two years since she witnessed her first seizure and Kayla realizes that she now knows how to respond to any type that Breanna might experience. She is able to change little Bree’s feeding tube like a professional and she can handle medical equipment and different situations as they occur. Scott and Kayla are parents to a special needs child of the most beautiful kind. Kayla shares what she has learned about a world that involves those who are dependent on us for assistance, “I’ve also learned SO many things about the disability world that I had no clue about. I didn’t understand just how hard it could be get life saving treatments. Or, how expensive medical equipment, treatments and medication truly were. It's a huge eye opener, and I hope one day to help with making changes. I want to help make things easier for people with disabilities. Even if it’s just providing medical equipment faster or educating people about Batten Disease.”
Kayla would share what is felt by all parents with children that battle Battens. The disease is a monster that first takes away a child’s ability to function at the same level as their peers. It is painful to watch your child regress in areas of development right before your eyes. Kayla would share that Breanna went from being an average three year old to one who was unable to keep up with other kids her age. This happened in less than a year. I know that the Neveri’s are grateful that enzyme replacement is available for their child. This gives them time as they wait and hope for additional treatments and even a cure. As a family, they have been through changes as a result of facing the monster that is Battens. Kayla shared the following to describe the changes that have taken place in them as a family, “It (Batten Disease) tore us down, but with the tearing down we found a strength we never knew was in us and it brought us closer together.” And that is exactly what should happen. Struggles like this disease should draw people closer together. Again, you never know how strong you can be until being strong is the only choice that you have.
Kayla shared about what life is like at the Neveri house, “Our life includes having lots of unknowns. It’s full of doctor appointments, medications, and medical equipment. But, it’s also full of laughter, dancing, and love.” I shared earlier that little Breanna is having difficulties in eating regular food but she loves to eat snack foods like chips and especially, popcorn. Kayla has gotten around to creating a group Facebook page for Breanna and she gave it an interesting name. Most of the pages that parents create will include the child’s name and perhaps a word such as “battle” or “journey”. Breanna’s page is different and I was a little curious as to why Kayla had given it the name that she did. I found the answer as she shared with me a bit about the things that they now consider to be important. When she did, it became one of those “Oh My Gosh” moments for me. This is what she said, “The things we used to take for granted are now things we cherish. Like those trails of popcorn. I used to clean them up right away, now I’m finding myself taking pictures of them.” The page that Kayla created to share Breanna’s journey with the public is named “Trails Of Popcorn”. Does that get to you like it did me? My prayer would be that those trails continue to show up on the floor for a long time to come.
They would and should be just your average family. That would be the case if it wasn’t for Batten Disease. Scott appears to be a big bear of a man but I bet he is the type you could call a gentle giant. A sensitive guy who cares deeply about his wife and his children. That’s a good thing! I loved having a few minutes to get to know Kayla at the Batten conference. She is another of a growing number of people on my awesome mom list. I bet she would give anything to be just ordinary again. I asked Kayla for a little bit of information about big brother Garrison who is now seven years old. She started by telling me that he is smart, funny, and handsome. She also told me that Garrison is a softy even though he is big and tall for his age. He loves art and storytelling and in fact, he is a talent when it comes to both. Garrison is a great big brother and he is best buddies with little Bree. Garrison has noticed the changes that have taken place with Breanna. He has grown in his understanding of Breanna’s situation but he still has questions as to why things are not the same as they use to be. I know that he loves his little sister an I am glad that Breanna has a big brother like Garrison!
Every family has difficulties but this family is facing something that is very challenging on an emotional level. I said at the beginning that there is something special about these kids. Can you see that too? They really tug at your heartstrings. There will be more challenges ahead for the Neveri family but they will do their best to meet everyone of them. This, because of their love for such an angelic little person as is Breanna. Hope and love carries them through each day and Kayla talked a little about that as she shared all of the following, “Our love for Breanna is strong and never ending. Some times Batten Disease gets the best of all of us, but the love we have trumps it all. Because each Batten kiddo is different, it’s hard to know exactly how the future will play out. So, we live in the now. We make as many good memories for Breanna and the rest of us as we can. We do many fun things as a family. Our hope is that a cure is to come soon. Or at least more treatments that let Breanna be her truest self. Where she can enjoy life without pain or regression. Life with Battens has introduced us to many, many challenges. Growing up my mom always said “Fake it ‘till you make it”. It’s a motto that I often find myself saying to myself. Most of the time we aren’t handling the challenges, but we sure know how to keep that smile on our face and keep going. Changes happen so often that once you have a handle on things. It changes on you. As parents you need to learn to adapt to the challenges.”
My friend Christen referred to Breanna as a “Real Life Doll” and she is correct in saying that she is. Breanna is her daddy’s little peanut and her momma’s perfect princess. Her eyes are beautiful. They are so deeply brown that they sometimes appear to be black. That is what stands out the most to me but it doesn’t end there. Kids are meant to be adored and they most often are. That is why it hurts so much to see them battle something like Batten Disease. Research and a cure needs to be a priority but telling people about these little warriors needs to be one also. It is a priority with me and it will be for as long as I am able to make it one. Just like Christen, I am passionate about these kids. I wish the Neveri family all the best and I feel privileged to be allowed to tell their story.
Blogger and Advocate
There is more that needs to be said. I had written this story over the span of an entire month as it was a challenge between work and the pending holiday. I had written it after viewing just a few of Breanna’s most recent pics. Upon being close to finishing, I requested pictures from Kayla and she sent what you see in the post. The story may have been written a little differently had I seen these pictures before starting to write. It may have been written with a little more passion and emotion, although I always try to capture my own feelings as I write. I really am moved by these stories but I was moved to tears when looking at all of these pics at the same time as they paint a picture all by themselves. What do you see? I see a family that is a perfect little story in progress. The dad is ruggedly handsome and mom is of course, young and attractive. Together, they have two children to make up what a lot of us would consider to be the perfect size family. Tragically, something happens that interrupts and changes the story. It involves a monster named Batten Disease. This is so typical with Batten families.
What I see from a distance is what I often talk about. Batten parents are stuck in the middle of the muck and the mire as they watch the disease progress. They are in a battle named Batten Disease. What I see from a distance are the details of undying love and sacrificial care. The depth of love that is often modeled by these families is, for the most part, without equal. I HATE Batten Disease because of what it does to children and for the way it affects families. I do though, truly love these children and their families whether that is always welcomed or not. I am so happy that some very wonderful things have taken place in the area of research and clinical trials. Finally, some real hope is in the air but everyone who follows these kids will tell you that it has taken too long. I am glad that Breanna is involved in one of these trials. She takes your breath away. Does she not?
Nobody will impact this family like Breanna will. This, both with close family and extended. Her life is priceless. People will be changed because of her. You can count on that! Breanna, you keep fighting like the little warrior princess that you are! I could go on but I better stop now. Thanks for taking the time...
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “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.” That is what happened to me!
Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so.
Blogger and Advocate
HOW THIS BLOG WORKS -
Take the titles listed below and go to month and year listed in the archives below (way below).
January 2017 -
*The Story Between The Lines
February 2017 -
*My Kind Of Royalty - CLN2
March 2017 -
*The Caring Type - CLN2
*Face to face: A Fairy-tale -CLN3
April 2017 -
*No Ordinary Love - CLN2
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story -CLN2
June 2017 -
*Seth and The Healing - CLN2
July 2017 -
*Little John and The Reason - CLN2
*Sands and The Scottish Princess - CLN3
August 2017 -
*A Rare Kind of Devotion -CLN2
*The Giggle Box - CLN2
September 2017 -
*Sweet Montanna and the Status - CLN3
October 2017 -
*The Blog about my Blog
*Sebastian's Story - CLN8
November 2017 -
*Kayden And The Change In Plans - CLN3
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2
*Brock and The Priceless Memories - CLN8
*Jamesy Boy and The Treatment - CLN2
*The Priceless Princess From Beyond - CLN2
*That Kind of Love - Conner's Story - CLN2
*What I See (She is a Butterfly) - CLN1
*No Longer Alone - Kristiina's Story - CLN2
*Things We've Talked About - Oscar's Story - CLN7
*The Reason Why - Hannah's Story - CLN3
*Kayla's Perfect Princess - Breanna's Story - CLN2
*Warriors Unaware - Mia and Kaleb - CLN2
*Her Little Story - CLN1
*Someone Like Raelynn
*Forever Royal - The Final Version - CLN2
*Awfully Beautiful - The Life of Noah and Laine - CLN2
*A Lifetime of Love - Tegen's Destiny CLN1
*Forever Beautiful - Gabi's Story - CLN7
*The Miracle Baby - Amelia's Story - CLN1
*Dylan's Life - A Small Town Story - CLN2
*Princess Grace and the Challenges - CLN2
*Anything for Tessa - Her Story - CLN2
*Haley Bug's Battle - A Family Story - CLN1
*Journey Unexpected - The Rich Family - CLN2
*My Life, My Everything - Lydia Rose - CLN2
*A Love That Hurts - Shashka's Story - CLN2
*The Things Looked Forward to - Addy’s Story - CLN3
*Love Complicated - Bailey Rae's Story - CLN3
*So Many Questions - Evelyn's Story - CLN2
*The Feelings They Produce - Violet's Story - CLN2
*Because of Love - Frankie's Story - CLN2
*The Need to Breathe - Scarlett's Story - CLN2
*The Beautiful Light of Haidyn Grace - MPS3
*Any Distance Traveled - Reagan's Story - MPS3
*The Missing Someone - Kiernan's Story - MPS3
*The Transformation - Victoria's Story - MPS3
*Not by Accident - The Charlie Grace Story - MPS1
*The Difference They Make - Harvy's Story - MPS6
*Love Profound - Veda Rae's Story - MPS3
Highlights from the beginning. When the blog was named 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