“It always stuns me that the Batten children are ALWAYS beautiful and glowing with such light and love reflected in their faces!! I seriously have a soft spot in my heart for every single Batten child. Rex, our very special angel, taught me a new kind of pure love.”
~Tina Halyama Emery~
Home Healthcare Nurse
The question was “why us” and it came from Christopher Velona. Most people know my long distance friend Christopher from Project Sebastian. People who know him, know that his son Sebastian battles the CLN8 variant of Batten Disease. You also know that Christopher has done everything in his power to help his son in the battle that is Battens (He, of course, has not been alone in this). One of the things that Christopher has done as of late is to start doing podcasts in conjunction with his other activities for Project Sebastian. I don’t know why he chose me to be his inaugural guest, but he did, and I was honored that I was chosen by him. We started the taping by talking about me and my wife Rosie’s life as parents to our special needs son Benjamin. Then we went on to talk about my involvement in the Batten community and why it is that I do what I do. I can’t remember exactly how he worded the question but it was something along the lines of, why? Why us, meaning the Batten community. Why am I doing what I am doing as an advocate? Why do I take the time to interact with Batten families, and why do I devote so much time to writing these stories in my blog? Why have I chosen the Batten community in particular?
The answer to that last question is that I didn’t choose to do this. It was just that through a set of very important circumstances that I first became aware of these beautiful kids that battle Batten Disease. Through this, a passion for them and their family’s stories was ignited. To me, it is so unlikely that I would learn about Batten Disease by following the legacy of a Navy SEAL, but I did. He wasn’t just any SEAL, although they are all amazing! Facebook and, social media in general, has taken a bad wrap at times. Sometimes, deservedly so. However, in many cases social media has been a force for good! A series of Facebook pages that led me to an underwater memorial dedicated to the legacy of this Navy SEAL would also lead me to becoming aware. My sensitivity towards people with special needs lended itself to a sensitivity to children with Batten Disease. I first began to write by writing about following this SEAL’s legacy all the way to his hometown. It was there that I also met a very special Batten princess. After that, one thing led to another.
I am a person that is driven by passion and once I started to write, the entire thing just blossomed into something special. This gave me a way to be involved in a community that I have grown to love and respect greatly. Greater awareness concerning Batten Disease was not my first thought but I think that the blog has helped with that. What happened was that I was so moved by the details of what I was writing that it continued to feed this new found passion that I have. Not only this, but the passion was fed by the appreciation that I have been shown by the families. I have repeated myself over and over again when it comes to the things that I see in the Batten community as a whole. That is so easy to do because it takes a certain type of character in a person in order to devote one’s self to the care of these children. Undying love in the face of adversity. I Understand that I am on the outside looking in and my perspective often reflects that. How difficult is it to move forward each day, knowing the eventual outcome? Deciding that you are going to do your very best in the worst situation, heartbroken and yet, resolute. What is it like to look into the face of your child each day? This, as you battle the disease together. These children seem more special than any other because of the circumstances that surround them. The whole thing just makes my heart melt inside of me.
These things weigh in heavily into this next story. There is more before we get started though, and it has to do with the Batten community as a whole. I have talked about this on several occasions. I was able to see from my activity online that the people that make up the community were very special to one another. Sure, there will always be some who will not get along but I think that this is in the minority. Being at this year’s Batten conference and seeing this group of people in person was an amazing experience for me. What is it like to experience the feelings of loneliness that comes with the diagnoses? You return home and eventually find out that you are part of a community that exist worldwide. There are others that know exactly what you have just experienced. They also know what you will go through in your journey. My next story is about a mom who went through great lengths, literally, to be at this year’s conference. This, only a short time after learning that her daughter had Batten Disease. Like many others, the answer came after a long search and several wrong diagnoses. She felt that it was so important to be at the conference and I can certainly understand why.
Laura Johnson had experienced the trauma of receiving the news that her daughter Hannah has Batten Disease and she wanted to be with others that could understand what she was facing. I had met Laura online through Facebook, of course. I knew that she was a Batten mom but I didn’t know much about her as we had just gotten acquainted. I saw that she had set up a gofundme account and that she was seeking help for getting to the conference. As it was approaching quickly, she still was not sure at that time as to whether or not she would make it to Nashville. As for me, I had made my way there and found myself at the Airport Marriott hotel. There were so many people at the conference and it would be impossible to meet everyone. I was able to spend time with most of the people that I already knew and it was especially nice to spend meal time together. As I was leaving after dinner on one of the first nights there, I took a random path through the dining room in order to exit. This particular path led me to a table that included a mom with her daughter and the mom greeted me with a warm smile. It was Laura and Hannah! It is very possible that had we not crossed paths at that point that we may have never met, but we did. I loved meeting them, along with many of the others, and we would go on to spend a few moments together on a few occasions after that.
One of the reasons why I do what I do is because I think so highly of people like Laura. She received what she needed to attend the conference just in time to get moving. Laura rented a car and her and Hannah would drive thirty hours straight to get there. To me, that is amazing as I don’t think that I would be capable of doing that myself. In the blog that I did about attending the conference, I had given the title of Tiger Momma to Laura. I meant to use her as an example of the many that represent moms in the Batten community. Moms that persevere and do whatever it takes. Always putting the interest of their child before themselves. Laura would tell you that she is just in survival mode and that she was just doing what was instinctive. I am telling you that what I see from the outside looking in is that she is amazing. Me and Laura talked about the blog and the possibility of doing her’s and Hannah’s story. To this, she said yes and so here we go!
Laura hadn’t been opposed to the idea of having children but she didn’t expect it to happen so soon. She and her future husband, who was serving in the military, had eloped. They had plans for saving and having a real wedding, with a reception, a year later. However, the news that she was pregnant with their first child changed all of that. Laura had never babysat or changed a diaper in her life and this left her worried. How was she going to care for a baby? After all, she wanted to get things right and so Laura read every baby book in the library in order to prepare herself. Talk about training through correspondence!
Having children and raising them is a life changer for sure. Laura had no idea at the time as to how this first baby would impact her life, but that was a fact in the making. She would deliver her baby at Balboa Naval medical center in San Diego, California as her husband was in the Coast Guard. They would have a baby girl and named her Hannah. The baby was born close to her due date and the day that she entered this world was September the 16th of 2003. It was after midnight that she would make her entrance and she was oh, so beautiful. She had all her fingers and toes and she was covered in brand new baby skin. Her first cry was loud and strong as she was so healthy! Neighbors were nervous as to how cool Laura was under pressure. Labor would take twenty hours and during that time, she could be seen painting her nails. This, because she didn’t want them to look bad when everyone came to see her newborn baby.
A small indication of what Hannah’s personality would be like came at the very beginning as they placed her on Laura’s chest. Hannah started to nurse right away. She would go on to be so strong and good at nursing that she actually would injure her mom in that way. Laura would have to endure this for a good year. This, because she wanted to continue nursing Hannah for as long as she could for the best start possible. The way that Hannah took to nursing would not be the only way in which she would show mom how quick she was. Hannah had a slight fever at birth and so the hospital staff kept her for three days. Seeing that they were new at this, Hannah’s parents liked this as they felt it would be good to have some back up early on. The nurses had wheeled one of those clear plastic boxes, used for a crib, into the room but Laura refused to allow Hannah to leave her arms. They would scold her for this but Laura stood her ground. Hannah was eight pounds and twelve ounces at birth and she was gaining weight already by the time they left the hospital. The nurses said that this never happens but it could be attributed to Hannah’s ability to nurse so well right after birth. Hannah would go on to be in the 99th percentile in height and weight her whole life. That though, was not the only way in which you could consider her to be exceptional.
Laura said that her baby girl was so striking although she was slightly annoyed by her daughter’s appearance. What? You see, she had carried Hannah all that time and Laura felt that she was supposed to look like her. However, Hannah was a mini-me to her dad. She had bright blue eyes and pitch black hair. Nevertheless, Laura loved her newborn baby and she was going to give motherhood everything that she had to give. As it is with most young military families, there is not a lot of extra money to spare. The young couple would leave the hospital with their newborn baby girl in a small Nissan truck. The three of them barely fit into it as little Hannah’s car seat took up a lot of space. They would take Hannah home to her first apartment which would be in Ocean Beach. This was in the greater San Diego area where Hannah would begin her life as a beach baby. Hannah would continue her development and she would have no fear as she grew. The couple would frequently take her to Dog Beach with them. Hannah was completely comfortable with the water and the huge dogs that were there. Again, Hannah was a big girl for her age. Laura said that the pediatrician would match up the rolls on her legs to make sure that they were developing equally. She joked that Hannah looked so much like a very small Stay Puft Marshmallow man!
Laura stated that Hannah would go on to meet most of her early milestones of development. The only exception was walking. In this area, she would not take flight until age fourteen months. Laura is quick to admit that, as a new mom, she didn’t know all the do’s and don'ts of parenting. This is how she would put it, “I was an overachiever mom, catching her when she fell, and giving her what she wanted when she grunted. I didn't know any better when I was a new mom.” Perhaps the only other thing that was noticed to be a little different in Hannah was in the area of her speech. Some of her words would come out sounding funny but that often happens with children as they are developing.
Laura said that Hannah would not tolerate a hearing test. This, to check to see if her speech problems were related to her hearing. As Hannah grew, it was apparent that she was extremely intelligent. Laura said that for example, she knew how to change the disc in the DVD player when she was still in diapers. It was noted by teachers that she was in the top of her class in preschool. Laura said that she had potty trained Hannah in two days. She was enrolled on Friday and started school on Monday in regular underclothes. No diaper! She would remain at the top of her class all throughout early education. You could only imagine the level of pride that was felt by all of those who loved Hannah. Not only was Hannah smart but she was determined and also beautiful. Here is more of what Laura had to say, “She was so smart and so beautiful, and also, very independent. She would never hold my hand crossing the street. I felt like a failed mom, not being able to get her to hold my hand.”
There was no reason to believe anything other than that Hannah’s future was packed full of potential. This, even with the slow start in the couple of areas that she would overcome. The future looked nothing but bright. Hannah was so sweet and so much fun from a very early age. She amazed her mother and all others who took notice of her. Even with Hannah’s independent attitude she was, overall, very well behaved. However, like the rest of us, she wasn’t perfect. Laura recalls one situation in which Hannah felt that she would take care of business when a situation in preschool arose. It happened after being picked on all throughout the day by a little boy named Tupac. It must have been at the final recess of the day. Hannah had thought about how she might handle Tupac and as a result she laid in wait at the tunnel that was next to the slide. She decided that she would clean Tupac’s clock and by doing so in the tunnel her crime would go unnoticed. She was successful in taking care of Tupac but somehow, the staff would find out and Hannah would wind up in the principal's office. This is where Laura would pick her up at the end of the day. I am sure that Tupac learned his lesson. Don’t mess with Hannah. How cute!
Hannah would also do the cutest things. Part of the families existence early on included having to move frequently. This was due to Hannah’s daddy’s military service. Hannah would observe her mom as she packed bags and dragged them to the front door. Hannah, being as smart as she was, would copy her mommy. It would be moving time and there was Hannah in her diaper, dragging her little bags to the door. There were many ways in which Hannah stood out as a child. One area was her ability to predict when women are pregnant. Laura stated that Hannah, in fact, had a sixth sense when it comes to this. According to Laura, Hannah, who was three years old, had informed her that Laura was expecting. Laura didn’t even know at the time but she was pregnant with Hannah’s little brother. In another case, Hannah had broken the news to Laura’s sister that she was expecting twins and she provided details with the news. She new that one twin would be a girl and one would be a boy. She also predicted that the girl would be born first, and she in fact was correct.That, is down right spooky!
Laura was not the type to just sit around. She has always been active in furthering her education by attending college, and various other classes. She would actually bring Hannah with her to classes and that shows real commitment. Laura attended so many classes that she started to stack up credits and would eventually apply most of them to an AA degree in Liberal Arts. It didn’t matter where they had moved to. She would be in school and gained all of her credits by attending as many as four different colleges. Moving didn’t stop her. Laura would later become very involved in physical fitness and she would, as an example, one day even become a Zumba instructor. She also would receive her certification as a volunteer emergency medical technician. The skills that she learned would actually help her save her own daughter’s life one time when Hannah was choking. Laura would admit, though, that it wasn’t a good career choice. This, because she isn’t good around blood. Yes, that is important in that line of work.
As Hannah continued to grow, it was easy to see her charm and beauty. She was so full of promise and personality. Her independence and strong will would lead one to believe that she would be successful in whatever she chose to do with her life. She was full of life and was so much fun to be with. Why would all of these great character traits not continue to develop in her as she continued to grow. I have stated the following so many times in the past. There is no love like that which exists between a mother and her child. I believe that to be especially true when it comes to a mother and her daughter. As one would expect, the bond between Hannah and her mom was especially close. Hannah would, however, have to share the love that was felt for her with a new sibling. Her new little brother James came into this world when Hannah was three and a half years old. Their little family now seemed to be well rounded and complete. A girl and a boy! Every family has its challenges along the way. Financial challenges, for example, are always a big concern. Health issues can be also. For children, there are always the usual bumps and bruises along the way. Operations to fix defects or maybe a broken bone may have to be set. Those things are normal and we expect them to happen. Although, we do not look forward to those types of events.
We normally think of marriage as being a lifelong commitment. I don’t think that anyone steps into marriage thinking anything else, however, things don’t always go as planned. People change and we are sometimes changed by circumstances that we don’t expect to happen. Kids are affected by separation and divorce but sometimes, it can’t be avoided. When it comes to these stories, the kids that battle Battens are always the focus but life doesn’t stop for the disease. By that, I mean that other things happen around us and often, they take place before a diagnosis is found. Sometimes things happen after the diagnosis, or even, as a result of the added stress. It is never my intent to assess blame or to decide who has the greater responsibility. The circumstances related to a divorce do impact a story greatly though when that story is about a child. Laura’s marriage was a troubled one and it would not last. The worst part was that she would find herself in a situation where she would have shared custody of the children. To further complicate things, custody was shared across state lines and from a great distance. The situation was a complicated one and it left Laura with only having her children in the summer and on holidays. Why would I even bring this up? It is because this story is about the love that exists between a mother and her daughter. That being Laura and Hannah. Much of the time, they were separated by several hundred miles of interstate highway. Hannah was less than five years old when this began. Her little brother was only a year and a half year in age. Oh, my gosh! How stressful this must have been for all that were involved.
Laura said that she would often return home to California with tears streaming down her face. A young mom without her children. I cannot imagine! I suppose that there is much more that could be written about Hannah’s life during the dark years of partial separation but much is lost because of the time away. I am sure that there are many sweet details that could be shared from the time that her and Laura had together. The focus here though, will shift to the challenges. It had to be at about the age of seven to eight years old that Hannah started to change. She started to exhibit signs that something was developing in her. Something that took her outside the normal range health for kids her age. Hannah was healthy when it came to illness. She didn’t catch colds easily, for example, as others might. There was, however, behavioral issues involved with her. Laura said that Hannah had a family practitioner that she was seeing while at her dad's house and that he had misdiagnosed her four times. ADHD was the first diagnosis. That one is usually the first to be thrown at kids who exhibit problems or behavioral issues. Then it was Autism and later, Asperger’s Syndrome. This happened over the seven years that Hannah was separated from Laura. During that time, Hannah was prescribed one medication after another. None of these solved the problem. Eventually, Laura would take Hannah to the Autism Assessment Center for Excellence in San Bernardino. While there, it was determined that Hannah did not have Autism.To be fair, doctors don’t always know what to do when the puzzle is a difficult one to put together. I think that the best doctors are those that are good at solving problems. They take a real interest in a child and they also know when the child needs to be referred to a specialist.
Hannah would experience her first seizure when she was eleven years old. This happened after being up late while having a slumber party. Laura said that the seizures were not very frequent but also, that she couldn’t be sure. This because Hannah was not with her full-time. It was about the same time, at eleven years old, that Hannah came home from her dad’s with glasses on. Why now? She had never had vision problems before. One of the things that caused Laura to become concerned early on was when she would ask Hannah to get something out of her room. She would return repeatedly empty handed and Laura chalked it up to a behavioural issue. It was, however, related to a loss of vision. Laura would find out later that Hannah couldn’t see. According to her, Hannah was hiding this from them because Hannah thought that they would love her less if she wasn’t perfect. Laura said that she, personally, was devastated when she found this out. I am sure that the situation was complicated by the fact that Hannah was living in two different places during each year after her parents separated. So it was over a seven year period that Hannah was either misdiagnosed or undiagnosed but things would soon change. Laura did not know what was taking place in her daughter. Whatever it was, it was delaying Hannah’s development. Laura kept investigating and would consult different specialists as she looked for answers. Something wasn’t right and her daughter was being taken from her by something. Something that she did not yet know existed. Meanwhile, Hannah’s father would become angry with Laura over the fact that she was not accepting the diagnosis from the out of state family doctor. Hannah was just being given medication and Laura knew that there was more going on than what was being discussed.
And, it was at this time that Hannah was becoming more difficult while at her father’s house. Laura said that as she started losing her vision she would get stuck on the way home from school. This, as she walked alone after getting off of the bus. She would even get stuck on the wrong side of snow berms. Hannah would call out for her mom frantically. You could only imagine that Laura was frantic as well. Knowing that her daughter may not be getting what she needed. Hannah knew what she needed, and that was HER MOTHER! Hannah would tell anyone that would listen. Teachers, doctors, nurses, anyone! She was always asking for her mother, as well as, trying to call her. As a result, she was just becoming hard to handle. My heart aches as I write this part. It was just the best thing for everyone involved that she would be with her mom full-time. And so, she was reunited with Laura! There is no love like a mother’s love. Especially when we are talking about a mother and her daughter. For whatever Hannah had going on, she needed special attention.
As has already been stated, Laura would not stop until she had the answer as to what was happening with Hannah. She continued to seek the help of specialists and that would eventually lead her and Hannah to a geneticist. Tests would be performed and the answer was found. Hannah had CLN3, Juvenile Batten Disease. So as it most often is with Juvenile Battens, there is a long search and a tendency to think that the conclusion is obvious, i.e., several false diagnoses. In saying this, I don’t mean to indict any one parent or health professional. Moms have a special intuition that cannot be ignored or denied. Laura had the answer that she sought but it was not one that any parent would want to find out about. The devastation that followed came from learning about something that Laura never knew existed. Batten Disease. This is how she put it to me, “It was truly traumatic. Nobody had ever heard of this.” She continued to explain in another place concerning her reaction and the effect that that the news had on her, “I couldn't believe it. I cried for two months. I felt just like I did when my mom died. I am not really here. I am just Hannah’s caregiver. I can’t hear what she is saying. I am grieving so hard already.”
Already grieving as if she had lost Hannah and yet functional in Hannah’s care. These comments come from a mom that would do anything and everything in order to help her daughter. I know from following Laura and Hannah’s story that she would regroup as best as she could and she now provides daily, the best quality of life possible for Hannah. Yes, emotions run high at times but it is so easy to see the love connection that exists between this special mom and daughter. Laura had a huge smile on her face when we met at the conference. There must have been a big mixture of emotions behind that smile. Her long drive to get to there shows a deep level of commitment to Hannah. It also shows the need to be connected to the others that make up the Batten community. This, because only they can truly understand what she is going through. Laura stated, in so many words, that finding a physician that truly cares is difficult to come by. They are out there though! She would meet one at the conference that she would love to have for Hannah. The fact that Laura found this doctor there at the conference speaks volumes.
The continuous driving that Laura would do in order to be with her children had conditioned her for the drive to the conference. It would be only a short time after Hannah’s diagnoses that they would find their way to Nashville and I am so glad that they did. I know that Hannah has her bad days and I am sure that she is often frustrated as she goes through changes because of the disease. She is so sweet. It was special to be able to meet these two. Hannah was quiet and soft spoken. I could tell that she was happy to be there and I know that she was made to feel welcome by those who cared for her. These, after all, are people that understand. Hannah was so happy to show off the things that she was making in craft time and she was such a pleasure to talk to.
These kids should be fussed over because they are truly special. What a dear she is! Hannah and her mom, as well as, the entire Batten community are the reason why I am writing at this time. It started with the love I felt for one little girl and her mom. This soon spread to an entire community and I feel privileged by every story that I am allowed to write.
Laura is a very bright and intelligent person. That is easy to see by what she has already accomplished in life. This leads to a question. What would Laura be able to accomplish if she was not struggling with Hannah’s disease? You see, this is the type of thing that I have talked about when I have mentioned the sacrifices that Batten parents are often asked to make for their children. This is especially true when we are talking about single moms that cannot work full-time, and sometimes not at all. For Laura, it is a struggle to pay bills and to keep a roof over her’s and Hannah’s head. She has been advised by some to put Hannah in a full-time care facility. Laura stated the fact that this is too difficult and too expensive. She would go on to say that which I already knew to be the true of her, “ I cannot give up. I will serve her selflessly until I die.”
Laura has gotten some really amazing moral support from her boyfriend who regularly spends time with her and Hannah. I love it when I here about men that step up to the plate (a baseball term), so to speak. There are so many men that would see a situation like Laura’s and say, no thanks! You already know how I feel about things and it is so nice to see another guy that feels the same way. What’s his name? You’ll never know because he chooses to remain anonymous. An unsung hero. Laura says that his life has been greatly affected by Hannah’s life. Just like I thought. Being around these kids can change a person. They make yours heart go pitter patter. That is if you are the right type of person. Life can be stressful in such a situation as Laura’s and her boyfriend chooses to stay in her life in spite of the stress that exists. Laura would actually tell him that he should leave for his own sake but he refuses to do so. She puts it like this, “I have asked him to leave, to save himself, for his own sanity. But he stays with me for mine.” He has even stayed although it may have kept him from maintaining certain career objectives. Together, they enjoy taking Hannah on outings to places like Lake Havasu for some fun in the water.
I have said it before but I will repeat. I believe that these kids come into people's lives for a reason. Then again, it would be so easy for me to say something like that. I am a proud parent to an adult special needs person but I have never experienced what a Batten parent has. The journey brings with it many special memories but it also brings a ton of heartache as changes take place. Laura had the following to say about her daughter, “Hannah is so bright and so determined. She would be a force worth reckoning with if not for this fatal detrimental disease. She was at the top of her class until the disease started taking effect. It is awful and nobody knows our pain, not even close family.”
In another place, she talks about Hannah’s resilience, “She has an active imagination and loves to play with toys. She does her own research on YouTube on batten disease and toys she would like to own.”
Laura enjoys working at a ranch that uses horses as therapy for kids with special needs. It is called T.H.E. center ranch (stands for therapeutic handicapable equestrian). Hannah received a scholarship after the nine months that it took to complete the process. She now gets to ride for an hour a week and Laura is working on becoming an instructor there. Her desire would be to become an instructor full-time. This, if Hannah’s situation would allow her to someday. What a rewarding career it would be to assist those who have special needs. All because she is the mom of a very special warrior princess! One might think that there aren’t any silver linings when it comes to Batten Disease. One of the few positives may be the people that you meet. In the course of the journey, you become part of a great extended family. One that understands what you are experiencing and feeling. Many of those friendships will last a lifetime. Laura had this to say about her experience and meeting people in the Batten community, “I had never heard of Battens until her official diagnosis. Not even a guess. I was shocked. I am never to be the same. Some of the people I have met from the Batten community have been life changing, they are so strong and so positive. I am glad to have been able to be blessed to have met them.” I have read comments like this from many now. In fact, I have witnessed it first hand. This truth, concerning the Batten community, is another reason why. Strength in the face of adversity.
Life is a struggle for Laura right now as she cares for Hannah. Yes, there are some good things happening as well but the challenges remain. Financial hardship is a big one for her. There is no way that she would do things differently but she wishes that things were not so difficult. I am glad that Laura has discovered the support that is available to her through the Batten community. I wish that there were more people outside of those who battle Battens that could step up. Someone like Laura is so deserving, and what about Hannah? Meeting her was a pleasure and she is so special! More than anything, these kids are the reason why I write. I love my special needs son so much and I have no regrets about having him in our home. What I see in the circumstances surrounding kids with Batten Disease is so much more challenging than anything that we face. Batten kids tug at your heart like none other. They battle so hard and show us so much about resilience and the indomitable human spirit. They often love and are loved in ways that others are not capable of. I know that it has taken me a bit of time but does this explain the reason why? I hope so. Prayers and best wishes to Laura and Hannah. I hope to see them again next year in Denver, if not sooner.
Blogger and Advocate
I don’t normally use this blog as a tool for fundraising. That as it is not my purpose in doing what I do with this blog. I am posting the link to Hannah’s gofundme account because this particular family is in great need. Laura is so deserving of any help that she gets and it’s Christmas!
She is a great mom and, as the saying goes, she is stuck between a rock and a hard place! This last statement from her says a lot about her as a person, “I feel numb. I am not sure how to feel right now. I am weak but strong for my child. I am humbled beyond words but willing to help others and have been volunteering to help with horses.”
Please help if you are able. Click on the link below:
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