“I have always called Mya my little butterfly because her beauty has always awed me. Like when we see a butterfly and we are awed by their beauty. Also, as time went on the meaning grew. Especially when I heard this song (She’s a Butterfly - Martina McBride) and dedicated it to Mya.”
I have said this before. Spreading awareness concerning Batten Disease was not my original intent. Things just kind of snowballed, and one thing led to another. Yes, this has become my little niche’ for spreading awareness, but greater awareness is just a byproduct, if you will, of what my actual objective is. I do what I do in order to bring honor to those who battle Battens, and also those who have done so in the past. The stories were simple in the beginning, but they have now grown in size and complexity. Often times, the details are, oh, so sweet. This, in large part, because of the love that is shown towards these young warriors.
Some will say that I have no idea what Batten families lives are like, and that I have no right to be involved. With others, I have gained acceptance, and I have been shown their appreciation for what I am doing. In the former case, I have to agree that I have never experienced what a parent goes through when they are in the midst of the struggle that is Batten Disease. Caring for someone that battles Battens brings about circumstances that not many will experience. These are normal people that have been asked to endure something that is extraordinary. It is tragic when a parent is told that their child has a disease for which there is no cure. Even worse, when one is told that the disease is fatal. I have used the term “A Beautiful Tragedy” in the past as an analogy and I was able to get away with it. I am going to use it again here. When something tragic happens, it brings with it terror and dire circumstances. Nobody wants a tragedy to take place. Sometimes, though, beautiful things come out of tragedy that would have otherwise never surfaced. People work better together in those times and are generally less selfish. Strength and determination are often on display during difficult times. Resilience is at full strength. Love is displayed without hindrance. The type that care separate themselves from those that care only for themselves. Heroes are made and strong bonds are created. These things, however, may often be only viewed from a distance. Those in the midst of the tragedy may be too overwhelmed by the circumstances to see anything but the heartache.
I never want to create drama that isn’t there by the words that I choose to use. That being, as I write these stories. I only want to share my observations. Those that care for children with Batten Disease deal with the daily struggles and the heartache that is attached. I can identify with some of it as a parent to a special person, but only to a small degree. The parents of these children are often stuck in the muck and the mire as the disease progresses, whereas I can only form opinions from a distance. When I look at someone that has lost a child to Batten Disease, it is almost as if I can sense what they are feeling. There is no way, however, that I can feel the pain associated with that kind of loss.
Being hidden from the daily circumstances, I see, from a distance, the sweet details. Undying love in action. Heartbrokenness mixed with resolve to do your very best. Caring for an innocent child or young adult as they battle Battens. The bond of affection is intensified by hours of care and time spent together. These little ones become our heroes, and they are due that honor. I received the nicest comment about my last blog that I wrote after attending the Batten conference In Nashville this year. It came from a veteran warrior mom who had lost her daughter to Batten Disease all the way back in the mid 70s. Susan Lesko Klee had this to say to me after reading the blog entry, “Thank You for sharing your beautiful thoughts, and for loving our children so fiercely.” I love the word fierce as it is used in relationship to the type of feelings that surround these kids. I Googled the word and this is part of what I found. A usage within the definition for the word says something like this, “A feeling, emotion, or action, showing a heartfelt and powerful intensity.” The words powerful and intense are both perfect in describing the type of love that I see being displayed by those who care for these children. It is difficult for me to not feel it as well after observing so many people putting that kind of love into action. Children with Batten Disease produce these types of feelings. This, is what I see. This next story is about one such child.
Jessica Nicole was alone, and she was left to deal with some extraordinary circumstances. This, as it was time to welcome her first child into the world. Doctors had seen some abnormalities in her expectant child through an ultrasound that had been performed. As a result, it was decided that it would be best to induce labor. She had been carrying her baby for forty weeks and the doctors didn’t want to wait any longer. The time was 8:55 in the morning of October the 2nd, 2008. That was the time that her baby girl came into the world. Her mommy would name her Mya Nicole, and from that point on they would forever share the same middle name. Never had Jessica experienced an event such as this. She held her brand new baby in her arms, and she was her very own. Mya was perfect, and she was perfectly beautiful. She was covered in brand new baby skin and she was, to Jessica, the most lovely little thing that she had ever seen. Who could argue that this was the case? Just look at her!
Jessica would tell me that she had never felt true love before like she had felt at that time. This all took place at Forsyth Medical Center in Winston Salem, North Carolina. It happened, however, that her joy over the experience was quickly turned into feelings of confusion. This because the staff took little Mya away from her mommy in only a moment after she was placed in Jessica’s arms. I can only imagine what a whirlwind of events this must have seemed like to her. Mya needed to be examined further because of the problems that were detected in the ultrasound. Little Mya was taken to the neonatal intensive care unit (NICU) where they would discover that she had several serious issues that she was facing. The least concerning was that she had a club foot on her right side. This is something that could be corrected by surgery. Along with that were some more serious issues. Her little spine was shown to be abnormal, and she had a missing kidney on her right side. The largest issue that baby Mya faced was with her little heart. She had a Ventricular Septal Defect with double outlet ventricle. This means that Mya had a hole in her heart, and an abnormality in the plumbing within her heart. Barely into the world, Mya would already be a little warrior of a princess. None of what she was facing would cause Jessica to think less of her infant daughter. She described how she felt as she became the mother of little Mya, “...when I saw her, I didn't see a baby. My baby with defects. I saw the most beautiful child I’d ever seen. She was gentle and sweet.” There is no doubt that the bond was instantaneously strong. She had carried little Mya for nine months and she was here. The love that she felt for her daughter was powerful, and the problems that were present would not deter her! Jessica would stay by Mya’s side, refusing to leave her baby.
Baby Mya would do well while in NICU but then would contract Sepsis, which is an infection of the blood. This can, of course, be very serious. Little Mya was placed in a room within the pediatric intensive care unit (PICU) with Jessica by her side. There was no family present at any time nor was Mya’s biological father there. Jessica was just eighteen years old at the time, and she was without a clue as to what to do. The situation would have been very desperate except for the attention that they both had received from a very caring group of nurses. They were at Jessica’s side to give her comfort and relief when she had feelings of being overwhelmed by the situation. Mya would recover, and within a week it would be time for Jessica and Mya to leave the hospital. Alone and only eighteen years of age, Jessica would be confronted with more bad news before leaving. A doctor pulled her to the side and explained to her what he felt, at the time, was the probable cause of Mya’s health issues. This would only add to her increasing anxiety. The doctor went on to explain that he felt little Mya had a condition called Vacterl Syndrome. Otherwise known as VACTERL Association, this is a genetic disorder that affects many body systems all at once. The issues that little Mya was facing would cause doctors to fit her into this category, and she was officially diagnosed with the disorder two weeks into her life. According to the doctor, the condition is one that is very rare and there are many health professionals that do not know much about it. The biggest concern at that point was Mya’s heart. The doctor had a prediction that by age three months, Mya would suffer from congestive heart failure. He recommended that Mya be watched closely by a cardiologist through regular visits. The doctor would add that her heart had already started to weaken. He expected that little Mya would not make it past 6 to 7 months of age if the condition of her heart did not improve.
I can only imagine what it would be like for a young girl, who had been through so much already, to be given this kind of news. To look at the little person that she had brought into this world with great expectation. She could have been defeated by what she had heard, but instead she chose to have faith. Jessica described what she was feeling, “My heart dropped. I was a mess, but I was determined no matter what, Mya would be okay. We would get her healthy. God has a plan for my child.” In fact, He did have a plan and still does. This all weighed on Jessica’s mind as she left the hospital with baby Mya. It was time to go but what would she return to as she went home? Jessica lived, at that time, with Mya’s father, but the situation was not a good one for her and her baby. She needed to leave. This, on top of all of the new complications, they needed to move and find a new place to live.
Jessica reached out to social services as she could not think of anything else to do. It was no accident that she would be put into contact with a very wonderful and loving family that would help and assist in a huge way. It would be easy enough to mention their last name, but let’s just call them, well, The Angel family. Angels do exist you know. They are God’s special agents, and they are often sent to help. Most of the time, we don’t even know that they are there. However, sometimes they make their presence known, and it is unmistakable. The later case is what Jessica would experience as the Angel family took her and Mya into their home. It would be well worth it as this would require them to move from Virginia to Kernersville, North Carolina. Jessica and Mya would live with them for a few months until they were able to get on their feet and they were a tremendous help and support to them. Mom Angel is a registered nurse and her help with Mya was invaluable. She would attend Mya’s many appointments, and every surgery that she would require. This family even introduced Jessica to their church, and they provided so much support to her. Jessica credits them with helping her to be a better parent as they modeled these skills in their own home. They provided a shoulder for her to cry on, and they remain a huge support to her.
Support is what was needed as the challenges for Mya would continue. At three months of age, little Mya experienced congestive heart failure. This, just as the doctor had predicted. Heart failure meant that the pumping power in her little heart was weaker than what was needed to maintain proper blood flow. The doctors needed to perform reconstructive heart surgery on Mya, and that would include patching the hole that was about the size of a dime. The doctors wanted to hold off until Mya gained weight and would do so until she was seven months old. At that time, she was twelve pounds in weight and they could no longer put off the surgery. Her life was in jeopardy and they needed to take action. She underwent heart surgery at Brenner Children’s Hospital in Winston-Salem. Jessica waited hours as the Angel family sat by her side. Jessica said that she was a nervous wreck as she waited approximately six hours while the doctors worked on her baby’s heart. Mya was then pulled out of surgery, and it seemed that she had wires coming out of her everywhere. Jessica described her reaction which was certainly understandable, “I weeped and weeped. I just wanted to hold her and know that everything was okay.” More waiting, and then Jessica was finally let back in to the recovery room. Mya had a huge scar on her little chest and she was asleep, heavily sedated. Still, her appearance to Jessica was like that of a precious angel. Jessica said that days would go by and then the medical staff would begin to take her Mya off of medications, and they also removed her from machines. She must have been so relieved as she observed the results. As Mya awoke, she had a smile that was ear to ear, and it lit up the room. According to Jessica, it was like the surgery had never phased her. She would go on to describe the results as baby Mya recovered from heart surgery, “She began to roll over, crawl, and meet milestones as expected. She was such a happy baby and one that is full of personality and spunk. Even to this day she is that.”
Mya would need surgery to correct the other issues that she faced. She would go on to have seven surgeries on her right foot and a tethered spinal cord surgery. All of this took place by age four. After this, Jessica felt as if life for Mya would be smooth sailing. Children are just by nature, beautiful. Their features are pristine, and they are free of the lines that are brought on by the worries of life. Innocent fun as life’s lessons are taught are the order of the day. Jessica’s label of her daughter as being a butterfly was spot on. It is certain that she brightened any room that she occupied, and having her in your presence was pure joy. She had already been through so much, and had come through with flying colors. During these years Jessica would marry but the relationship wouldn’t last. Life happens, and things do not always work out the way that we would want them to. The big silver lining is that out of that came Mya’s little brother whose name is Cameron. Jessica is a person who has faith in God. She felt that He had His hand on her life even in spite of some of the difficulties that she had faced up to that point. Mya had turned five years old, and by this time her life had already touched the lives of many. That would include a family of angels who Jessica still considers to be her own! She decided that it was time to move back to Virginia and to be with family. So it was in December of 2013 that she moved back home, taking little Mya and Cameron with her. Upon returning home, Jessica would enroll both of her children in daycare, and both would do great in that setting. Mya was a late bloomer and didn’t start kindergarten until August of 2014 at age six and a half. That is when signs of a behavior issue started to surface. Little Mya was initially diagnosed with having ADHD. This seems to always be the first conclusion that people come to. Jessica said she was told that it was actually in the families best interest to pull Mya out of school. This was only two weeks after starting. The teacher felt that Mya had issues with defiance, and that she was not able to pay attention. After all this little girl had already been through. How disappointing this must have been for both Mya and Jessica.
Jessica stated that she was hurt by this, but proceeded to pull Mya out of school. She did so under protest and would soon place Mya in a private school. This, hoping that her daughter would get the help that she needed. The signs that there was a larger problem continued to develop, and they must have left this momma feeling a little bit weary. Even in private school Mya had issues with retaining information. Not only that but she also had forgotten the things that she learned in preschool. She could not write her name, do her ABCs, or her 123s. She could not even identify simple objects, and could barely hold a pencil. Her difficulties were great enough that Mya would have to be held back the following year. Jessica would have opportunity to place Mya back into the public school system at a time where she had moved to a different county within Virginia. In spite of what she had heard about the quality of education within the public schools, Jessica would find that they worked best for Mya. She said that at one point, she was able to find a teacher that really “got it”. Jessica would fight “tooth and nail” to get her daughter placed in special education, and Mya would eventually be given exactly what she needed. She loved school, and she loved to socialize. It would bring Jessica a measure of comfort to eventually find things that worked well for Mya. This, even though the symptoms of a greater problem would continue to develop.
Mya is a beautiful little girl for sure. She could really pour on the charm, and Jessica has the pictures to prove it. She would pose for Jessica whenever the camera was on her, and Mya was, and still is to this day, momma’s butterfly. Socially, she had proven to be in the butterfly category, and mom has always considered Mya to be a rare jewel. I have to say that I completely agree with her. The relationship between a mother and her child is a very special one. It is just my observation that there is a special quality of a bond between a mother and her daughter. The bond between Mya and Jessica was very strong. Especially after all they had experienced together. This would come into play as Jessica began to notice that Mya would no longer look her in the eyes. This began to happen as Mya had turned seven years old. Jessica was on to something and she described her reaction, “It drove me insane and worried me so much. I addressed it to her psychologist and she said not to worry.” Jessica’s thought was, “easier said than done.”
Symptoms of a disorder that was unknown to Jessica would continue to develop in young Mya. It was as if a puzzle was being poured out on the table and the pieces would have to be put together. Jessica would begin to notice changes in Mya’s vision. She would have to hold objects close in order to see them well, or she would use her peripheral vision to look at things. Jessica would, of course, take Mya to see an eye doctor, but the results would be less than perfect. The doctor would tell Jessica that Mya’s eyes were fine, but he would prescribe glasses in hopes that it would help. Mya broke them in a week. The problems would just continue to mount. Jessica would see more problems that were taking place with her butterfly. Mya was struggling to write, and retaining information was becoming much more difficult. How disheartening and frustrating this must have been for Jessica. This is not to mention how frustrating it was to sweet Mya. This was all taking place as Mya was going to be starting the first grade, and Jessica felt that she needed some answers. Just as with most every mom, she knew something was wrong. As she would put it, “I knew in my heart something was not right.” At that time, Mya was still seeing a psychologist, and during an appointment Jessica was asked if she noticed Mya having staring spells. Jessica was surprised with being asked this question. That is something that she had never noticed with Mya. The psychologist questioned whether Mya may be having seizures or not. As a result, she would refer little Mya to a neurologist at UVA (University of Virginia) Hospital in Charlottesville, Virginia. This was a two hour and 45 minute drive, but Jessica would have traveled any distance to put more of the puzzle together. She wanted the best care possible for Mya and a diagnosis for something that was reversible. She felt, at that time, that whatever was going on with her daughter had to be fixable.
Something good would happen for Jessica and her children while this was taking place over the course of time. A male friend named Tracy had contacted Jessica, and they began to talk about things. They had known each other for seventeen years, and their relationship would develop into something that was more than a friendship, although it would also remain that. Jessica had just finished moving into a nice place to live with her two children when they began to talk. They would date for a while, and would introduce themselves to each others children within a short period of time. The pair hit it off right away, and their relationship would blossom. Life can bring with it difficult circumstances at times. For some the challenges are greater than they are with others. Jessica shared with me concerning much of what she had faced personally up to the point that Mya had come into her life. I can tell you that it was more than a lot of people have gone through. Of all the challengers that she had faced up to that point, the journey that she would embark on with Mya would be the greatest challenge of them all. I have so much respect for her as a person. She is also, to say the least, an incredibly caring mommy. The challenges would only become bigger, and Tracy would become the biggest means of support for Jessica on an emotional level. This, both with handling the struggles of the past and also the challenges that would come in their future. Jessica refers to Tracy as her ”best friend and soulmate”. According to her, Tracy is a hard working guy, and he loves her children as he would his own. Tracy would become a huge help with Mya, and he loves to make her laugh. For this reason, he and Mya have a special bond. Both Mya and her brother Cameron refer to Tracy as their daddy. Jessica has told me that he is in all honesty the only one that the kids have ever known. Tracy’s support would be much needed as Mya’s situation continued to become more complicated.
The struggle would continue and the puzzle would continue to be pieced together as the family met Doctor Heinen, a neurologist, in October of last year. Jessica would refer to her as a wonderful woman and a Godsend. She is the kind of doctor that goes above and beyond in her patient to doctor relationships. This was especially evident as Mya came into her office for the first time. Jessica would tell me that Dr. Heinan fell in love with Mya instantly and she was eager to help in every way that she could. Dr. Heinan’s face would light up when she entered the room as another bond was being formed between her and Mya. Jessica had prayed over the initial appointment as the day arrived, hoping that answers could be found. She stated that the appointment seemed long and her nerves were shot as time moved on. Finally the doctor said that an EEG should be performed to which Jessica was in full agreement. The results would come back showing an abnormality. Mya was, in fact having seizures and she would receive an initial diagnosis of Epilepsy. She was prescribed medication and would do well on the meds for some time. This must have given Jessica a certain feeling of relief. People with Epilepsy can often lead a close to normal life. Even so, to be an epileptic on top of all she had already been through. How much could one little person go face in a lifetime? Any feelings of relief for Jessica would be short lived and overall she was still unsettled with things. The puzzle would soon be put together and the picture would present the biggest challenge of them all.
Even with an official diagnosis of epilepsy, Jessica had left that first neurology appointment not feeling quite right. She described what she was feeling, “After that appointment I never felt right. I felt like God was tapping me on my shoulder trying to prepare me for something, but I was too busy and stubborn to listen to Him. I didn't want to believe there may actually be something more that was wrong with my child.” This would lead her to make a decision. It was right before Christmas of 2017 that Jessica decided that she needed to quit her job in order to keep her focus on Mya. She had, up until then, been working as a manager of a fast food restaurant for five years. Jessica knew in her heart that Mya would need her in a big way. This as, being a mother, her instincts were in full effect. It was the day after Christmas that an event would take place. This would lead to the next stage in determining what was taking place in Jessica’s butterfly of a little girl. At the time, Mya was sitting at the table she began to be held in a jerking motion. She wouldn’t move or speak and it was obvious that she was seizing. The decision was made to load her into the car and to rush her to UVA hospital as quickly as they could. As they arrived, Jessica told the staff that they were not leaving until every last test was run on her daughter and some answers were available. They would be there for four days.
Doctors and other staff would run a 48 hour EEG, an MRI, and Mya would be seen by an eye doctor. They still would leave with no answers. The only information that they would receive is that Mya’s brain volume appeared to be smaller than usual for someone her age. Jessica was told, though, that this was nothing to worry about. It would soon be known, however, that the low brain volume was due to degeneration. The tension had to have been mounting for both Jessica and also Tracy as he stood by her side. This darling little girl had been through so much already in her young life, and there was more that was developing. It was the very next day after leaving that Jessica received a call from the neurologist. They wanted a genetic panel performed on Mya. This was to be performed on February the 26th of this year (2018). They would, of course, go get the blood drawn and it would not take long to get the results. Jessica would receive the next call on March 30th stating that she needed to come to UVA hospital very soon. The results were back and they made an appointment for April the 4th. Jessica stated that they had never got her in that quickly before. Once they had arrived, the family was escorted quickly to the appointment room. It also did not take long for Dr. Heinan to arrive, and with her was a genetic counselor.
Jessica said that she watched the doctor and that she observed her facial expression and her body language. Jessica knew from what she had seen that the doctor was going to tell her something painful. This had to of set both Jessica and Tracy on edge. Jessica said that Dr. Heinan grabbed her hands and looked her straight in the eyes. She could see that it was difficult to tell her what she had to say as she proceeded to speak. I’ll use the very words that were given to me by Jessica as they were told to her, "Ms. Hardy, Mya’s test came back and we found some abnormalities. Mya has NCL which is also referred to as Batten Disease. This is a terminal illness."
Most parents that are given the news that their child has Batten Disease have never heard of it. They go on a search for answers thinking that whatever the problem is, it can be fixed once it is identified. It is a fact that Jessica had known what Batten Disease was as she received the diagnosis. This because she had followed a page on Facebook about a young girl who had an NCL (neuronal ceroid lipofuscinoses). Jessica felt that it was almost as if God had taken her to the page in order that she would be informed about Batten disease. Certainly, nothing could prepare her as the diagnoses was given to her. The following was her response as she received the news, “Everything else she (the doctor) said was a blur to me and my heart shattered. Everything around me stopped and I remember saying no no no, then saying I knew it I knew it I knew it. Crying, I looked at Tracy and he was crying. I got up and I grabbed Mya and held her. I asked Dr. Heinan, "there has to be something we can do. She said Mya has CLN1 and there was nothing to cure it, only meds to help with symptoms. I felt so many emotions at one time. Why was my child, who had already been through so much, having to have this horrible diagnosis and this outcome? This isn't fair. I took it very hard and became very depressed.”
Just like it is with every parent that receives this awful news, there is the initial shock and range of emotions that comes with it. “My child! What do you mean we can’t fix this?” The initial trauma subsides and it is replaced with a determination to do the very best that one can for their child. Hope, acceptance, heartbrokenness, pure love, and a bond that is so strong that it will never be broken. These are, in all likelihood, the things that are experienced. These events and the changes that follow are things that Jessica has experienced as well. She shares these words, “I am finally getting out of the depression and learning to take things a day at a time while enjoying what life of Mya’s I have left to share with her. I try to do my best.”
I have said it before and I will continue to hold fast in my belief. These kids change people like none other. Their resilience, strength, and determination are so inspiring. How they go about changing the way that we view the things that are important. How they teach us to keep going on our worst days. The special memories that they create. Yes, even from a distance, I can see that there are not many like them. If I am affected like this from a distance, how much more those who are close. I feel that Batten moms (and dads too) experience things in life that not many people will. Jessica shares more about Mya, “My life definitely changed. At first, like I said, I did not take it well. I believe the outcome of all of this will be the beautiful Legacy Mya will leave behind and that legacy of her’s I will continue to share. Also through her legacy Batten Awareness will be spread. Research on Mya may provide a cure? Whatever the outcome, Mya will have served her purpose and fulfilled God's will for her. She will be able to help others through her story of strength (Mya doesn't let anything stop her), her determination, beauty, and joyfulness.” I have been touched personally by each of these kids that I have followed and none more than I have watching Mya from a distance. She has had to battle right out of the starting gate and has been through so much. What a precious little warrior princess she is!
Jessica’s perspective on things is spot on. I think that it reflects the feelings that are held by many others within the community that she is now a part of. Working through the heartbreak, she looks for the positives in her situation. Here is more of what she had to say. In this, she includes anticipating going as a family to Mya’s Make-A-Wish trip, “Even though I watch my child become weaker, and now having issues with stiffened muscles, knowing someday she will not be capable of walking. I hang on to my faith in God and I watch Mya fight like she has since day one. She wears a smile like nothing bothers her, and she is so happy and loving. Next week she will go on the biggest trip and wish of her life. To see her smile and enjoy it with her brother and us, her family, will be all that matters to me.”
As we go through life, one of the most important things that we have are the memories that are made along the way. I have no doubt that with a Batten child, making memories is so very important. Both for them and for their family. That is why the Make-A-Wish Foundation is such a special organization. Not only are memories made but the warrior prince or princess is held in a special place of honor. This, as they should be. Tracy, Jessica, Mya, and Cameron would go together as a family to Walt Disney World in early August of this year. Jessica told princess Mya about the trip as soon as she was accepted for it by the organization. She did this so that Mya would become excited as she anticipated leaving for the trip which meant so much to her. Mya would have a send off party before going, and she looked all the part of a princess, and she definitely was, and is, a butterfly. Mya especially enjoyed the light shows and fireworks. This is not to mention interacting with all of the Disney characters. Like most of us, the family does not have a ton of money laying around. This made the help that Tracy and Jessica received with the trip so very much appreciated. Jessica shared that Make-A-Wish truly made their dream come true! You just know that was the truth when it comes to Mya.
This is a family of a rare kind and Mya will always be a giant part of who they are. No one else will have a greater impact on this family than Mya will. I want her to battle forward, just as she always has already. There will be further challenges but my hope is that Mya’s life will draw the people that love her closer together. I have the deepest respect for any man that takes on himself the responsibilities that Tracy has. He loves Jessica’s children and he stays by Jessica and her children’s side regardless of the challenges. Tracy refers to Mya as “his baby girl”. He has been a huge help to Jessica in the time that they have been together, and she has said as much. She says this concerning Tracy, “When I felt defeated and could not move on he has picked me up and carried me through this. Sometimes when I did not have the strength.” Mya’s little brother Cameron is six years old. Jessica says that he is extremely smart and is also a very loving child. She refers to the bond that exists between Mya and Cameron as “inseparable”. Jessica feels that Cameron was sent by God to help with his big sister and who could argue with that? She considers both her kids to be a blessing even with the challenges.
Yes, a fierce kind of love is in order when it comes to these children. Anybody with any amount of feeling has to be moved by the details. Writing these stories has become a big reason for my waking up each morning, and I will continue as long as I am able. This, because these kids show us so much that is of great value. They absolutely amaze me as do their families. Ordinary people that have been asked to do something that is extra special. Progress is being made but for the families, it couldn’t come soon enough. The stories are in a big sense filled with tragedy, but the details of undying love and commitment are very beautiful. These little warriors are extremely special and I am moved by what I see!
I want to tell you a little more about what I see as I close. I have a close friend on Facebook named Christen who I will often talk to about this blog. She is always a great source of encouragement to me and a big supporter of what I do. I was sharing a little about this particular article with Christen and I forwarded a picture of Mya to her. Her initial comment was that Mya is a beautiful princess. She did not have in mind the fact that her mom calls Mya her little butterfly but I am sure that she can see what I see. That is what her mother sees. Mya is beautiful just like the most beautiful butterfly you could imagine. With her long dark hair and olive complexion, she is a little beauty. Jessica had made a short video for me of Mya doing her best to say hello to me, and it provided one of those moments. In the video, Mya was working so hard to do the things that her body was not cooperating completely in doing. She would get the job done though. It was amazing, and precious, and I shared it with Christen. This is all of what she said after watching it, “Oh my goodness, she’s so precious. She tries so hard, and she’s so sweet. I just want to hug her.” My reply was simply, “You see why I do what I do (Writing this blog)?” Christen said in response, “I absolutely do. I understand totally.”
Christen gets it and she sees what I see. These young warriors; boys, girls, and young adults just tug at your heart like nothing else. Yes, loving them so fiercely is the right thing to do. This, because they so deserve it, and because they just cause it to happen, if you are the right type of person. I am that type. I can see that Mya is a butterfly, and that, she will always be that. She is a butterfly.
Blogger and Advocate
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