“We’ve decided that, rather than spending the rest of the time we have with him being sad, we’re going to enjoy our time with him and his siblings as much as we can. We’re going on adventures, spending more time playing together, snuggling more…doing the things we have always done but with less wasted time.”
Kiernan’s Mom and Advocate
I hope that my readers do not mind me drawing from my experience of being a father to someone who has special needs. That is from the things experienced by being Benjamin’s father. Some things we can draw from to create comparisons. That being with the things that we share in common with those who have children with rare diseases. I am always careful to draw a definite line that needs to be placed between our circumstances and theirs. Parents that receive a diagnosis that says that their child is fatal will experience things that are beyond anything that we have been through. The story that I am headed towards as I write these words will detail the journey of a family that will experience more than we have seen. This is because rare circumstances create an experience that is not seen by many. Being a parent to someone with special needs never crossed my mind as we began to raise our first two boys. Perhaps we should have left things there but our family did not yet seem complete. We wanted a little girl but that was not to be. Instead, we were given the opportunity to be parents to one very special human being. This, being our son Benjamin. Life seemed so normal up to the point that we had him. It was a normal go to work to raise a family kind of an experience. Things changed after we had him and we had to learn to adapt. Certainly, my life revolved around providing for my family but the extra needs that existed were never far away in my thinking. Much was left to my wife as I had to work to support my young family but I stayed involved as much as I could.
Our son was sick a lot and that required more time at the doctor’s office. There were battles over insurance coverage for things like durable medical equipment and things they would not cover. There were trips to the hospital and surgeries that otherwise would not have been needed. Getting him services that were needed required a lot of work. There were days that my wife’s frustration boiled over after dealing with various people over the phone. Everything from getting a handle on constant ear infections to controlling seizures were dealt with. We were never told that our son’s condition was fatal, although we were once told that it appeared to be degenerative in nature. This was after genetic testing was performed at a young age. Here it is, 30 years later. We have seen some of his skills start to deteriorate but he is still with us and we are happy to have had him in our presence. He is a special guy! While there are some ways in which our circumstances have been similar, there is nothing like having doctors reveal to you the fact that your child has a fatal disease for which there is no treatment and no cure. I think that being the parent to someone with special needs is a special experience. For a long time, I have felt that being a parent to one like our Benjamin is a special calling in life. Those who have children with a rare and fatal disease would love to have been dealt the same hand that we were. Many start their journeys believing that their child has a condition that they can live with. However, as the search for answers progresses, the news worsens.
Sometimes, more than one diagnosis is received with each one being progressively worse. Whatever the case may be, I believe that being a parent to one of these rare kids is a special calling as well. This, even though there may be much sadness involved. You have never loved to the degree that a person does, until you have loved a child with a rare disease. Call me naive, but I do believe that these kids produce in us a type of love that is like none other. Working through the heartache in order to care for a rare child like this produces in people a type of love that is profound and undying. There is a bond formed that is stronger than any other. Knowing the plight of a child that is on a rare journey and seeing how hard they work at just living a child’s life does something inside of a person. There are feelings produced that can’t necessarily be described in detail. It’s the type of love that can overwhelm a person. These kids can change people and also the direction of a person’s life. They often do that! There is always hope as awareness is raised and the promise of clinical trials come about. In some cases, positive results occur. What may happen for one family in the way of progress towards a cure can often bring hope to others. A breakthrough in research for one type of disease can happen for another. I have mentioned this previously and the thought comes to mind once again. This, as we begin a story about another child that has embarked on a journey with Sanfilippo Syndrome. Would it not be wonderful if the parents of a rare child could say, “My child was found to have a rare and fatal disease for which there is no cure, but then, there was this clinical trial ... “?
Two People Meet
This next story takes place in the great state of Tennessee, here in the USA. Like so many of the stories that I have done about rare children, this one starts with two people that meet and fall in love. This is that type of story and it’s time to get started. The story began in 1995 when Shaun O’Neal and Amanda Ogle met while attending high school. It was no accident that they both had French class together and that is where they caught each other’s eye. Shaun was a junior at that time and Amanda was a Sophomore. They didn’t begin to date right away as that began to take place starting in 1996. Shaun was at that time, 18 years old and Amanda was 16. It was as they started dating that they quickly realized that they were something special together. Shaun and Amanda knew that they were meant for one another. They would however, take their time and they did not rush into things. Shaun and Amanda would date for three and a half years and in the course of time, they would make plans to marry. It would happen in March of the year 2000 that this couple would become man and wife. During this time together, they would talk about their plans for the future. Amanda had a desire to teach and would pursue a Masters degree in education. Shaun wanted to have a career in law enforcement and that he would do. He began to serve his community, working at a local police department the same year that they were married. This couple’s plans for their future also included having a family after they were established in a career. Amanda would continue with her education, earning her degree and beginning to teach. It was during Amanda’s first year of teaching that her and Shaun would receive some very welcomed news. They were going to have their first child.
Things were coming together for this young couple and they were so excited as the time arrived for Amanda to deliver her baby. Both her and Shaun had met their goals for entering a career field of their choice and now, they would be parents. It would be in July of 2005 that they would welcome a little girl into their world. Nothing could be more special. They would name their newborn daughter Lierin and you just know that everyone that laid eyes on Lierin would adore her. She was born with all of her fingers and toes and she was so perfect in every way. Life was good and it was getting better by the day. Parenting their new daughter and anticipating new additions to the family led Shaun and Amanda to make a difficult decision. That being that it was best for Amanda to stay home and be a full time mom. She would do that after working in the teaching profession for a year and the couple felt good about their decision. They so enjoyed their time with little Lierin as they watched her grow and family life was to mom and dad’s liking. After adjusting to their new role as parents and enjoying their firstborn daughter for a time, the time seemed right to add to their family. Amanda would soon after be expecting their second child and the anticipation of their family growing was exciting. It would be in April of 2008 that Shaun and Amanda would welcome a baby boy into the family. This child they would name Kellen and just like his big sister had been three years before, baby Kellen was born healthy and whole. Shaun and Amanda now had one of each, a girl and a boy. Their little family was certainly coming together and the joy of having children was now multiplied by two.
Time would continue, just as it always does. Shaun was busy with work and growing as a law enforcement officer. He loved what he was doing for a career and he was especially pleased that he could provide for a growing family. Shaun loved being a dad and spending time with his family during off duty hours. That is a huge part of why we all work. That being to provide for the ones we love. For Amanda’s part, she loved the days spent with her two children, as well as, being a supportive companion to Shaun. As the two children continued to grow, the question as to how the O’Neals would handle their kid’s education would be at the forefront of their thinking. After discussing things among themselves, Shaun and Amanda would make the decision to have their children home school. This important decision was made in 2010, right before Lierin was to be starting kindergarten. There is some great curriculum out there for sure for home schooling but the O’Neals had something else going for them. That was the fact that Amanda was a trained educator. Why would they not take advantage of her training while providing a structured environment for their kids? Speaking of children, the O’Neal family was not yet complete and they would work on that! It would be the following spring that the O’Neals would welcome their next bundle of joy into the family. Lierin and Kellen would soon say hello to their new baby brother as Amanda would give Shaun another son. This little guy they would name Rory. Of course, just like his older siblings, Rory was a healthy and complete baby boy. He was loved instantly upon his delivery and the O’Neals were now a family of five.
Having two kids was wonderful but having three children made things feel complete. A family of five has a nice ring to it and a parent’s attention is certainly divided enough with three children. There was however, more for this family to experience together and they felt like something was missing. They did not yet know what that was but Shaun and Amanda did feel that something was missing for them as parents. Amanda explains that there was this urge to have yet another child and she talks about where it came from with the following, “After Rory was born, we thought we were done having babies, but all throughout 2013, Shaun and I kept feeling like someone was missing. We even accidentally ordered an extra kid’s meal at a restaurant more than once! We fought the feeling for a whole year before we decided to give in.” Someone very special would soon be on the way as Shaun and Amanda made the decision to have yet another child. There was someone who would enter their lives that would cause them to experience something that as parents, they had not yet known. They would experience things related to this child that would not be seen in the others. Shaun and Amanda would love this one as they did the other three. The only thing is that child number four would require more. Much more in the way of time and attention. Feelings that had not yet been felt would also be experienced. So it was in October of 2014 that Amanda would give birth to her fourth child. She would deliver to the family another baby boy and they would name him Kiernan. According to Amanda, Kiernan was in a hurry to get here. He was born at 37 weeks of gestation.
The Complete Family
While not being premature, Kiernan would come to this family a little early. This, while at the beginning of what would be considered the normal range of time (around 40 weeks). In addition to that, Amanda stated that Kiernan was born just seventeen minutes after the time that they would reach the hospital. Kiernan was born at Blount Memorial Hospital in Maryville, Tennessee, here in the USA. There was no trauma associated with his delivery but he did have a little bit of a problem with his breathing at first. The staff at the hospital would monitor this and Kiernan’s lungs would soon correct themselves without any time in NICU. You just know that he was a flawless looking little baby. He had all his fingers and toes and just like his sister and brothers had, Kiernan came to the showroom floor covered in brand new baby skin! Amanda felt nothing but “pure love” as she held Kiernan for the first time and who could not understand that? She held the person that would forever be the baby of the family in her arms. Not only that but she held the little person that was the missing piece to the O’Neal family. Shaun was a proud father for the fourth time and he was overjoyed with the experience. A love like none other would be experienced by everyone that Kiernan would meet and that would all begin as Kiernan met his parents for the first time. This writer knows from experience what it is like to be a parent to someone with special needs. However, the O’Neals would soon experience feelings beyond what I have felt. Kiernan was special in a very special way!
It is amazing how time flies and how quickly life passes by. It was now fourteen years since Shaun and Amanda had married. They were now the proud parents of four children and life as a family had really taken shape. They were active in life and in their community. Shaun was serving his community through his work and serving his family as well by providing for them. Amanda was now a full time mom that had her hands full. She was not only responsible for caring for her kids but she was also responsible for educating them. She was learning things along the way herself because as the old adage says, “You learn something new every day”. There were however, new challenges that were not yet expected but that would be revealed as Kiernan continued to grow. In the beginning, Kiernan would grow and excel in meeting his developmental milestones. His early development was normal and he would actually achieve his early milestones at a faster pace than his siblings had. Kiernan would begin to use his words about the same time that his brothers had but he didn’t start speaking in sentences as early as they did. Moms are generally pretty observant when it comes to the development of their child’s skills. Amanda also had the experience of teaching her other children using her education as a foundation. As time moved forward, it was apparent that Kiernan was having a difficult time in certain areas. For example, he was having problems with his alphabet and with learning to count.
It is true that children do develop their skills at different rates of speed so Shaun and Amanda were not too worried in the beginning of things. They assumed that Kiernan would catch up when he was ready. It made sense at that time that they had no idea. There were special circumstances that surrounded their youngest son. There was something else more obvious and very concerning that was taking place with Kiernan. That was that he was unwilling to potty train. Every parent looks forward to the time that their child becomes independent in this way. Changing a child or supervising them in the bathroom can, of course, be very time consuming. Amanda would tell me that they had friends whose children were also late in potty training and so, they thought that Kiernan would catch up in this area as well. They had no idea at this time that there was something significant developing with Kiernan but more would soon be revealed. It was in March of 2019 that Kiernan was brought to the doctor for his 4 year old wellness check. While there, the doctor did take notice concerning Kiernan’s speech delay and she stated at that time that Kiernan would benefit from having speech therapy. The O’Neals were referred to their local school system which offered the therapy free of charge. Once the school office was contacted, the testing required for Kiernan was set up and this is where more would be revealed concerning Shaun and Amanda’s youngest child. They would test Kiernan in all of the key areas of his development and would find that he had significant delays. There were special circumstances surrounding Kiernan.
There are oftentimes situations in which children are just a little bit slower at learning. These situations can be turned around by providing the child with additional help but sometimes, difficulties like this can be an indication of a larger issue. Kiernan would be accepted into a developmental pre-k class at a local school and that seemed to be a good fit for his individual needs. The special type of attention that Kiernan would get in the program seemed to pay off as the O’Neals would see growth in Kiernan after he started school. This was noticed by Shaun and Amanda who also noticed that Kiernan would backslide a bit after breaks from the classroom. Kiernan would love going to school and doing so seemed to be a good thing for him. Although encouraged by what they were seeing, Shaun and Amanda had begun to resign themselves to the fact that something was “wrong” with Kiernan. They just did not yet know what that was. Child number four had special needs and he was bringing to the family special circumstances that would have to be dealt with. What appeared to be the problem at the time was that Kiernan had something like autism or Tourette’s Syndrome. Maybe it wasn’t one of those specifically but Shaun and Amanda thought that it was something along those lines. They began to do research on their own and while they did see similarities between what they suspected and what they were seeing in Kiernan, there just wasn’t a complete fit.
A Life with Kiernan
Whatever the case concerning Kiernan would turn out to be, Shaun and Amanda were in the process of preparing themselves. They knew that Kiernan’s special needs were going to require extra attention and help for perhaps his entire lifetime. Here is what Amanda had to say about the realization concerning Kiernan’s situation, “We had discussed the fact that he was unlikely to ever be able to live independently, and we were okay with that because we didn’t think that he would feel or realize that he was missing out on something.” There is a time in which parents of a child with special needs start to understand that caring for their special child may be a lifelong commitment. Some might see this as a burden while others see it as an opportunity to experience love in a special kind of way. People with special needs often evoke feelings in a person that may not otherwise be drawn to the surface. The extra care and attention that is required can create a bond that is strong and unbreakable. The bond that was being created between Kiernan and his family was one that was just that. Their love for Kiernan was growing by the day and there was nothing that would change that. They did know at the time that the love that they had for this little guy would be stretched to the degree that it was about to be. There are not many people that would tie the symptoms that Shaun and Amanda were seeing to a rare disease. Most would not even think to consider it at this point. Perhaps, only if there was a known case within the family’s history. It was actually what Amanda would refer to as “a bit of a fluke” that the events leading to Kiernan’s diagnosis would take place. This would all happen as Kiernan would receive medical attention for something completely unrelated.
Amanda explained that Kiernan was a chewer, meaning that he would chew on random objects that he would come across. In this particular case, he had chosen to chew on the end of a bungee cord and would end up getting it hooked in his mouth. As a result, he would develop an infection and that was why he needed to be seen by a medical professional. This would take place in April of this year (2020) and it would be at that time Kiernan would be seen by a nurse practitioner. The NP would deal with the infection but as he did, he noticed something about Kiernan. That was that his facial features were “coarse” in appearance and this led him to believe that Kiernan may have had a form of MPS (Mucopolysaccharidoses). He suspected either Hurler or Hunter Syndrome (MPS I and MPS II) and he wanted Kiernan to be tested genetically. Like with many things in the year 2020, COVID-19 would interfere with Kiernan being seen in person by a genetic counselor but an appointment would take place regardless. It would take a few weeks but a telemedicine appointment would take place on May the 12th of this year. Several questions would be asked by the genetic counselor at that time and she would look at Kiernan through the webcam. Amanda said that the counselor was sufficiently convinced that Kiernan could have a genetic disorder and she would have Kiernan brought in to have blood drawn the following day.
Having the suspicion that Kiernan had a form of MPS made the testing more simple to perform. They would do testing specifically for an MPS related disorder using a kit provided by the company BioMarin. It would take about three weeks to get the results of the testing and once they were received, the O’Neal family would be changed forever. There are not many families that would ever suspect that their child has a rare disease as symptoms start to appear. We would usually suspect that whatever the problem, the issues surrounding a child can be resolved through treatment. When a diagnosis for a rare disease is given, life takes on a different dimension. A family experiences things that the majority of people will never see in a lifetime. There are feelings felt that are impossible to feel unless you have experienced something similar. The families go on a journey with their child and that journey will take them down a road less traveled. It would, in fact, be revealed that Kiernan did have a form of MPS but it was not one of the forms that had been suggested. I’ll let Amanda’s own words explain while giving us her and Shaun’s reaction, “On June 8, we received the phone call that would forever change our lives. The nurse told us that the test was negative for both Hunter and Hurler, but that it showed that he had a condition called Sanfilippo Syndrome. That completely knocked the breath out of us.” There is no doubt that the O’Neals would have been completely dismayed had Kiernan been found to have either Hunter or Hurler Syndrome. However, there was a reason that the news concerning the Sanfilippo diagnosis was especially hard to be informed about.
You see, it was just a little while ago, this year at the end of April, that a friend of Shaun and Amanda had lost a son to Sanfilippo type A. It seems cruelly ironic that their own son would receive a similar diagnosis. How devastating it would be to receive this news concerning their Kiernan. This special little man who had made their family complete also had Sanfilippo Syndrome. Right away, Shaun and Amanda knew what this meant. Amanda talks about what their immediate response was and what the days that have followed have been like for them, “We were, as is to be expected, absolutely devastated. We didn’t know how we were going to go on with our everyday lives when our world was just upended. There were several days of crying followed by weeks (so far) of feeling completely physically, mentally, and emotionally exhausted.” Shaun and Amanda are, at this point, not that far removed from having received the diagnosis. Not far at all! Amanda stated that they would meet with the geneticist, Dr. Hamm, the day after receiving the diagnosis over the phone. This would take place at East Tennessee Children’s Hospital in Knoxville. They would receive more details about the disease and would be told that Kiernan has Sanfilippo type B. The doctor discussed what additional testing was needed and also what the possibilities for clinical trials might be. Amanda would tell me that her dealings with all of the doctors that they have come in contact with has been positive. They have all shown her family an attitude of compassion and all of them have been helpful. Many of the phone calls that they have received have been from the doctors directly and not nurses or other staff members only.
Having doctors that care and who are empathetic makes a tremendous difference. There are not many things worse than to be given the news concerning your child’s diagnosis in a careless fashion. I have done stories in which this had been the case. The parents are just left alone to deal with things on their own. All, while being despondent and heartbroken. This was not the case for the O’Neals. Not only did the doctors deal caringly with the O’Neal family but they communicated well with each other. Here is what Amanda had to say about this, “Our pediatrician has been very supportive, and she knew about the diagnosis before we told her. We were shocked because that was the first time we’ve experienced such good communication between doctors’ offices. Dr. Hamm has been amazing!” For his part, the geneticist has not only made mention of a clinical trial that Kiernan may qualify for but he is actively helping with trying to get Kiernan placed in the trial. Not just any trial will do for mister Kiernan. He has Sanfilippo type B. There are four types of Sanfilippo Syndrome. They have been given the designations Sanfilippo type A, type B, type C, and type D. These trials are never a one size fits all since each one is specific to the enzyme that is affected. The very good news is that there is a clinical trial that is available at Nationwide Children’s Hospital that may become available to Kiernan. It involves Gene Replacement Therapy.
To explain things in the general sense, this is how Gene Replacement Therapy works. It starts with having a scientist create a good copy of the non-working or missing gene. The gene is then placed in what is called a vector. That acts as an envelope that will hopefully carry the gene to places it needs to go within the body. The vector is a naturally occurring virus that is chosen to do the job and it is used after it has had changes made to it. Interesting for sure, using a virus to perform such an important function. It sounds simple but the task is complex. This is a one time treatment and not a recurring type of therapy, such as Enzyme Replacement. The hope is that the cells within the body that are being affected by the missing enzyme will soon begin to function normally after GRT. This is amazing stuff and it is something so many parents with rare children hope to see happen in time to help their child (or children). The scientists that work on these projects are to me, another group of heroic individuals. As this is being written, Kiernan is in the process of being evaluated for eligibility to gain entrance into the program. So far, it seems as though he is a likely candidate and both Shaun and Amanda are guardedly optimistic. Maybe excited at the possibility is a better way to put it! Would it not be wonderful if this family could tell people about how their lives were changed by a clinical trial for Kiernan? This, as his life, and the quality of it, had been extended into adulthood. Remember, there was a time when the O’Neals thought that they perhaps had a child with something like autism on their hands. They gladly accepted the fact that they may have a son that would need help for a lifetime. They were okay with that and this, I completely understand!
I have asked the question so many times now. What is it about these kids? What is different about a child that has a disease that is rare and fatal? Is it the fact that they have to work so hard at just being a kid? Is it that they display a type of innocent resilience that is not seen in others? Is it being aware of the plight that is created by their condition? Is it the fact that we know, they are only here for a time? Is it the way that we see them battle, all the while, doing so with a smile? This, for as long as their bodies will allow them to? Is it the things that they teach us about what is important in life? Perhaps it is all of these things put together and so much more. The importance of Kiernan’s life to this family cannot be overstated. He is a very special little man. Here is what his mom, Amanda, had to say about him, “Even before we knew his diagnosis, even before his developmental delays became obvious, we all knew that Kiernan was a very special spirit, an absolutely integral part of our family. Our love for him is as potent and life-sustaining as the breath in our lungs and the blood in our veins. Kiernan’s diagnosis has really brought home to us that none of us is promised tomorrow.” Knowing this has caused this family to enjoy each and every day that they have with Kiernan and each other. Spending time with family is more important than any material pleasure that can gain our attention. The hope and prayer of Kiernan’s parents is that he will be accepted into the clinical trial that they are applying for. They are so close at this point. It would be so wonderful to have Kiernan’s life extended into adulthood but the O’Neals will take nothing for granted. They are grateful for each day that they have with him.
This family has decided that they will do their best to give their best to Kiernan. This, by trying to be as upbeat as possible while enjoying the time that they have with him. That may be a very long time, especially if Kiernan is accepted into the trial. The families that have gained access to these trials have often seen positive results and one would expect the same for the Kiernan and the O’Neal family. I know of so many other rare families that are just hoping that a trial for their child may become available soon. Just like the O’Neals, these others are giving their children the best life that they possibly can. A love that is profound and undying. That is what I see when I look at the details for each one of these stories. All you have to do is to look into the faces of these children to know why that type of love exists. This is what the heart is capable of when love is involved. Regardless of what happens, they will make Kiernan’s life as amazing as possible. Kiernan’s siblings along with his mom and dad will give him the attention that he so richly deserves while dealing with difficulties that his condition brings with it. This is not always an easy task. Repeating a part of our opening quote, Amanda explains their method of dealing with the challenge before them, “We’re going on adventures, spending more time playing together, snuggling more…doing the things we have always done but with less wasted time.” They do not know in complete form what the future will hold but Shaun and Amanda will make the best of the present that they are capable of.
Kids that Amaze
Have you ever been charmed by a little person? By their actions and the cute things that they do? Kids in general are special and that is why we enjoy having them around. Rare kids, however, are the most special and the most amazing. This even though there are challenges associated with the conditions that they battle. Their presence fills any space that they find themselves in. Amanda explained the experience of having Kiernan at their house in this way, “He brings all of us so much joy, so much laughter, and, admittedly, a bit of frustration (though, we try hard to keep that at bay since we know he can’t help some of the things that frustrate us). He is one of the sweetest, happiest children we’ve ever met, and he spreads his joy to all around him. Everyone who is blessed to get to know Kiernan can’t help but fall in love with him.” And you know what Shaun and Amanda? I believe you completely! The O’Neals are not alone in this. Not by a long shot. In addition to family and friends who are very supportive, they have discovered the community that they are a part of through social media. Receiving the insights of families that have faced the same challenges has been a great help. I know that they will be able to make themselves available to new families that come on board as their children are diagnosed. Their friend Chester was previously mentioned as having lost his son Lucas to Sanfilippo just prior to Kiernan’s diagnosis. Chester has been a true friend who has provided tremendous help to Shaun and Amanda at a local level.
The O’Neals are very new to Kiernan’s diagnosis and I so appreciate their willingness to tell others about their experience. They are trying to stay in the present time while not dwelling too much on what the future may hold. This, while also trying their best to get Kiernan all of the help that he needs. Although it is difficult, they try their best not to let worry and negative thinking consume their days. The time that they have to spend as a family is too precious but still, they do have their challenges. I know that Shaun and Amanda have worked at building a positive family foundation for themselves. This writer knows how important to our communities the men and women of law enforcement are and we, at this house, thank Shaun for his service. I know that he is every bit as good at fulfilling the requirements of his profession as he is at being a husband and a father. You just know that Amanda is exceptionally qualified to be the Mamma Bear of the house. Shaun not only does the work of a police officer but he also works part time with cattle at a ranch operation. This helps give Kiernan exposure to horses, cattle, and life in the country. The family keeps egg laying chickens and other messy little critters at their modest homestead. Mister Kiernan also does therapeutic horse riding and all of this together, makes him a real cowboy. Kiernan’s older sister and brothers are involved in TaeKwonDo and have been for the last two years. Lierin, who is the oldest, has just earned her probationary black belt and she instructs. You go girl! You get the picture, right? This is one really neat family!
There are people at the O’Neals church, and from their community, that have fasted on Kiernan’s behalf and prayers are continuously being said for him and his family. There have been GoFundMe accounts set up to help with Kiernan’s medical expenses and other people have found creative methods for raising funds. This includes things like selling baked goods and providing window decals free of charge to sell. The help for this family from others is ongoing and so appreciated. I think that show of support means as much to them as the funds that are being raised. Amanda explains while mentioning a big and upcoming event and it doesn’t end there. Here is what she had to say, “One of Shaun’s lifelong friends is organizing a benefit for Kiernan on Halloween with raffles, food, and activities for kids during the day and then a more adult-oriented party at night. We’ve even received money, prayers, and well-wishes from complete strangers. I think the biggest and most important effect of all of this is spreading awareness of this devastating disorder to others in our community.” Just showing that a person cares means so much to families like the O’Neals. Especially in this age where a “Me first” mentality seems to exist.
I sometimes think about what it would be like to be free of the responsibility, but I don’t think about it for very long. My experience of being a parent to someone with special needs was, I feel, meant to be. The experience of being Benjamin’s father is part of who I am. He is part of my identity as a person. Life would have been so much more simple had we not tried for that little girl that never came. I am so glad that he is part our lives. So you must know where I am going with this. I am going to ask, was this family meant to have someone like Kiernan in their lives? Was he sent to them? Kiernan would end up being the “something” that was missing. Whatever the outcome may be, will their lives have been made richer. This by having Kiernan come into their midst so that they can experience the type of love that they have for him? This may be a bigger question than people would want to entertain but I thought that it was worth asking. Regardless, Shaun and Amanda will do everything in their power to help their son win the battle that is Sanfilippo Syndrome. This they will do while the entire family enjoys each day with Kiernan. I’ll end with one final quote from Amanda, “We won’t stop advocating for him or making sure he gets all the treatment he needs, of course, but we want to make sure that’s not all his life is about…that he can still live a fun, joy-filled childhood, knowing how very much he is loved.” This is exactly what one would expect from a set of loving parents. A person couldn’t expect them to be anything but that when we are talking about a little guy like Kiernan. Thanks for taking the time to read his story!
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