“The love we have for Dylan is so strong that we are just devastated by this diagnosis ... but we have promised him to do everything we can to give him the best quality of life possible (driving 4 hours one way every other week for the rest of his life is just one example).”
Dylan’s Mom and Advocate
Have you ever thought about the quality of lifestyle in a small town as opposed to the experience of living in a big city? I suppose that it is true that time spent in either place has it’s pros and cons. There is much to do in a big city but the speed at which life is lived in a smaller town is often times more comfortable. The pace is slower. People are often more personable and friendly in smaller towns. They know each other more fully and they take the time, more often, to be involved in each other’s lives. This opinion is based on my own observations but I think that there is some truth to it. Some of it is based on my own experience as well. I grew up in San Jose, California. I am dating myself for sure but this took place in the 1960s and up to the late ‘70s.
I can tell you that things have really changed there and I could see the changes taking place even if I was not paying that close of attention. San Jose is now, of course, a major part of Silicon Valley but it had more of a small town quality when I was growing up there. People knew their neighbors and many were involved in each other's lives. As kids, we could roam the neighborhoods and our friend’s parents knew each other even from several blocks away. I know that this type of thing still exists to a degree in larger cities. It is true though, the more busy people get, the less time they have to be involved in each other's lives. My wife’s upbringing was similar to mine, however, she truly did grow up in a small town.
Her little town of Prineville, Oregon is now estimated to have a population of over ten thousand people. The town had only grown to just over five thousand by the time that she left to join the Navy. My wife really understood what it was like to live in a small town. She experienced the intimacy of living in such a place. Growing up amongst her peers wasn’t necessarily any easier but the quality of life experienced in her small town was noticeable. The families in her town knew each other. They were connected through church and civic groups. They were also connected through their children’s attendance in school and all the after school activities that came with that. Certainly, there were families that were lesser known, however, there were family names that were known throughout the community. The connections between the families in her town were often very strong and there was a bond that was shared. You could count on each other’s help when it was needed. Time and the increased busyness of life has changed things but I would like to think that this type of thing still exists. A challenge that might be handled by a large organization in a big city could otherwise be taken care of by one of these well known families in a small town.
A great example of this was borne out in my wife’s own life. She, being the daughter of a minister in this town in central Oregon, was so through adoption. One of seven children, she was first brought to this family by a very caring social worker. You see, her birth parents were incapable of caring for her. As a result, Rosie was brought to the doorsteps of this family in hopes that they would take her in. Of course, they said yes! Her life is a story unto it’s own but here is my point. Her future family’s name was known in the small community (Brookings, Oregon at the time) and this social worker knew where to turn to for help. She would spend the rest of her time prior to entering military service as a member of the family that accepted her on their doorstep. She was forever, after, to be a member of that family! This type of situation could be played out in many small town communities across America and I know that it often is. Perhaps that small town is really a neighborhood within a larger city.
Having a sense of community in the place that you live is important but community often takes place by another means. These days, in the age of technology, a community can be formed over social media. I never realized this until I became aware. You may ask, aware of what? Where I am going next is to speak briefly about the Batten community. What is the Batten community? It is a community (mostly on-line) that exists to support and strengthen families that have children who are battling Batten disease. It needs to be said that the Batten community is only one of many rare disease communities that exist. This, because of the thousands of known rare diseases that affect children. I do feel a connection with the Batten community in particular. This is because I have been taken by the details of these family’s stories as I have been allowed to put them into print. The community is not officially organized although it is supported by a handful of official organizations world wide. The Batten community does not exist because of a membership through an organization. Rather, it exists through a common experience and an empathy that comes through sharing this experience first hand.
Just like it often is in neighborhoods and small towns, there are people in the Batten community that are known and are able to help. Some families are very well known. Some families offer a tremendous amount of support to others in the Batten community, even while not being that well known. I can say through observation and opinion that being a member of the Batten community is not something that would be sought after. Even so, it is also my observation that the Batten community is something very special. This, because of the people that make it up. Mostly, it is because of these children who have a way about them. The feelings that they bring out of people are ones that can’t be adequately described. This next story is about another one of those children. He’s so charming and his story is a special one. Just like many of the others, it starts with two people that meet and fall in love. This is another family story and it takes place in a smaller kind of town, here in America. Let’s get started!
Their Story Begins
Greg Kring and Michelle Delano met through a mutual friend in 1994. They did not know that together, they were a small town story in the making but they did feel an attraction towards one another. Greg had already begun his career at Union Pacific Railroad and Michelle was attending college. She had a career in the medical field in mind and was pursuing an education that would help bring that about. Greg and Michelle didn’t jump into a relationship with both feet right away. Rather, they dated casually at first as their individual futures continued to develop. Of course, over time, their feelings for one another started to deepen and their relationship deepened as a result. It would one day be apparent that the future that they sought for themselves included each other. Dating became more serious and plans for marriage were discussed. They would discuss what each other's goals and desires for their future together would include and in the year 2000, they would wed.
Just like it would be with most people, Greg and Michelle’s plans for the future included having children. Both were career minded and they wanted what was best. They decided that two children was the best fit for them and that is what would come to pass. Their daughter Abby came to them first and she is now, soon to be 21 years of age. Their son Zach followed his big sister a couple of years later and he will be 19 years old this summer. It wouldn’t be long after Greg and Michelle married that their family was complete and it was time to start making their story a reality. Greg’s career at the railroad would continue and Michelle would complete her education in order to be a lab technologist. She would continue in this career, gaining both longevity and knowledge in her field. Life as a family would take shape and this would all take place in small town Nebraska. In North Platte, Nebraska to be exact. That is where their story would develop.
You can just imagine, or know first hand, the types of activities that might take place along the way. Kids with school and school work, and parents working to provide a future. Evenings and weekends being spent together with each other and with extended family as well. Greg’s family background is in farming and time is still spent on the family farm to this day. Togetherness mixed with hard work in order to accomplish life’s goals provide memories that will last. Both Abby and Zach would develop career goals of their own. This, of course, as they grew from being toddlers into young adulthood. My, how time flies! Abby, like her mother, would come to desire a career in the medical field and Zach would want to attend school to be a lawyer. Much of life would be centered around helping Abby and Zach achieve their goals. So, as time moved forward, this family of four worked towards achieving those goals. This, while enjoying the bond that they had with each other. All the while, they never expected that life would be any different than what was being experienced.
I am certain that Greg and Michelle were looking forward to all of the normal life events that come with having children that have grown. Graduations and the start of their kid’s careers, marriages and an increase in the size of the family ... Grandkids! All of those things, they still look forward to but time and circumstance would bring an unexpected person into their lives. Their small town story would change in a very significant way and that would all take shape in the summer of the year 2015. That is when they would meet someone who would impact their lives like none other. Hearts would be captured by a little man named Dylan. All you have to do to understand is to look at the early pictures of Dylan (and even the most recent). From the very beginning, he was such a charming little fellow. Michelle had met Dylan for the first time in June of 2015 when he was only a week old. You see Dylan’s grandmother, Casey, was best friends with Michelle’s mom and that is how the connection was first made. Dylan had been born healthy and his delivery into this world happened without complication.
The Orchestated Life
The complications that did exist in Dylan’s life had to do with his birth parents, both of which were young. Neither were really capable of providing the care that Dylan needed. It is sometimes the circumstances that surround a child’s life that the parents are not yet ready to take on the responsibility of raising a child. This, for various reasons, was the situation with Dylan’s life. His mom and dad were not able to provide him with a proper foundation and both agreed that was so. Sometimes, a child’s entrance into a family appears to be a random occurrence but please make no mistake, Dylan’s life is no accident. His meeting Michelle and her family came with great purpose. One might say that the events that would follow show that his life has been orchestrated. It is not necessary to go into complete detail but Dylan’s situation would dictate the need for the intervention of the court. His situation would also involve the help of a social worker at the beginning of Dylan’s days on the planet. The involvement of Michelle and her family would begin to take place as she was asked to help provide respite care for Dylan. This, by Dylan’s grandmother, or his MeMaw as she would soon become known through Dylan.
Some of the very things that the Krings sought for their own family were the things that would be recognized by Dylan’s case worker. The most prominent being the stability that existed in their home. You see, Dylan had been removed from the situation that he was in and he would have to be placed in someone’s care. It was not that Dylan was not loved or wanted by the members of his biological family. It’s just that caring for a child his age brought challenges that needed to be handled by someone that could provide that stability. Greg and Michelle would be approached about the possibility of them becoming Dylan’s legal guardians. They agreed to consider this, thinking that assuming guardianship would be done so on a short term basis. This had to be considered as such. After all, their family was complete. Michelle was “finished” having children and they were working towards having an empty nest. Both Abby and Zach were focused on completing their own goals, even with being teenagers at this time. Having Dylan at their home would involve the entire family and so, for that reason, a family meeting was held. Michelle wanted to know how the kids felt about this. Abby was 16 years old at the time and Zach was 14. The sentiments expressed by the kids would not be surprising. Abby was, of course “super excited” and Zach was indifferent towards the proposal. Just as you would expect a 14 year old boy to be. He was okay with the idea. He just didn’t care to have any additional responsibilities because of Dylan’s presence.
The family had started doing respite care for Dylan in July of 2015. By September, mediation on Dylan’s behalf took place. He would first be placed with the Krings on a temporary basis but then, his placement would become permanent. What do you think happened as Dylan stayed with the Krings? The answer is that they fell for him completely. That is what Michelle stated with the following, “The longer Dylan stayed, the more our family fell in love with him and he became ours.” Dylan would fit right in at the Kring house. He even looked physically like he was a naturally born sibling within the family. Dylan would go from being someone that Zac was indifferent towards, to being Zac’s little brother. You know what I mean, don’t you? He was so completely charming and so happy. Dylan has a twinkle in his eye and his smile lights up any room that he is in. He’s a busy little man and so full of energy. Dylan loves to talk and he does a lot of that. (I don’t want to get ahead of the story but I got to hear Dylan talking over the phone as I discussed details with Michelle for this story. His charm was clearly evident, even from a great distance away. Hearing him after seeing his pictures was amazing!)
Life would continue for the four Kring family members, just as had been expected but they now had this little charmer in their lives. Life was good, just as before but they now had this presence that brought added joy to the household. The longer he was with this family, the deeper the love connection between him and the Krings! Dylan had been evaluated by Early Childhood Development through the age of 3. This, because of his removal and placement into the Kring home. He would then be released from the program because he was meeting or exceeding all of his developmental milestones. Dylan quickly became part of the family and he belonged to them. Just like with his new brother and sister, Greg and Michelle had a future for Dylan in mind. They would even begin a college fund for Dylan. This little guy was loved and his future looked as bright as can be. His coming to this family was no accident. Some would even say that his presence in the Kring house was divinely purposed. Regardless of what his future would hold, Dylan was home and he was feeling the love of an entire family. He was not just feeling the love from his new family but from his biological family as well. This, because spending time with everyone was highly encouraged. Time spent with his “biologicals” would include his grandparents, both maternal and paternal. Dylan would continue to be a much loved little man. Can you see why that would be? Of course, there would be challenges along the way. That would be expected but there were things to come that no one knew even existed.
It seems that most all children experience some of life’s difficulties along the way. Bumps and bruises, broken bones or just lots of scraped knees. That is the normal hardships that are experienced by little people along the way. I’ve said this before but it’s worth repeating here. A child’s life should be filled with laughter and innocent fun as life’s lessons are learned. Sometimes though, there are more difficult things that are experienced by children. These are the things that often leave us heartbroken for a time but hopefully, they are things that can be overcome. No doubt, it would be expected that a little boy like Dylan would see some normal types of troubles along the way but he would start to experience more than that. One of the most alarming things that can take place is a parent witnessing their child having a seizure. These can sometimes be an isolated occurrence but many times, they are indicative of a condition that requires treatment. Either way, they are frightening to experience for the first time. Dylan’s health had been normal and his development had been right on track up until February of 2018. That is when he experienced a seizure for the first time. He was taken to the emergency room where they determined that he had experienced a febrile seizure and they were adamant that this is what had occured. The problem is that this type of seizure is brought on by an elevated temperature and Dylan did not have a fever. There is nothing more that Greg and Michelle could have done at the time other than take Dylan home.
I am certain that both of his parents were concerned and watchful for anything that might follow. It was also in February of 2018 that the Krings petitioned the court for the purpose of adopting Dylan. Their commitment to Dylan was for a lifetime and they were hoping to make him their adopted son. The result of the Krings petition would not be what they had desired. Greg and Michelle were told that the rights of Dylan’s birth mother came into play and she was not willing to allow this to happen. This, even though Dylan’s birth father was ready to sign over Dylan to the Krings. It would not be proper to villainize the actions of a young girl and Dylan’s birth mom. This is being written just to state the reality of what would take place. So the result would be that Greg and Michelle were not able to legally adopt Dylan. Even with this, the guardianship for Dylan is still intact to this day. He is exactly where he needed to be and this would be proven to be the case as his situation continued to develop. I mentioned that it has been suggested that the events surrounding Dylan’s life have been orchestrated. The fact is that even the disappointment over not being able to adopt this little guy came with a purpose. This would have to do with controlling the costs of Dylan’s future medical care. There was more to come. Much more.
The seizures would recur. In fact, little Dylan would experience a cluster of seizures the following month. This was at the end of March. The event would see him being transported to Children’s Hospital in Omaha via ambulance. Once there, they would keep Dylan for evaluation over a three day period. As one might guess to be the case, he was given the initial diagnosis of epilepsy. With that, Dylan was prescribed medication and that would bring the seizures under control. The seizures would be controlled for a few months but then, things would change. As January of 2019 rolled around, Dylan had yet another seizure and a change of medication would take place. New symptoms would develop during this period of time and they would be even more alarming. The symptoms included slurred speech and confusion. Dylan also was experiencing bouts with Ataxia. This involves a lack of muscle control and coordination. The Krings were seeing regression in Dylan’s basic skills. What was it that was taking place with this sweet little man? Why him? Was all of this just simple epilepsy or was there more to Dylan’s situation? Perhaps there was something that he was genetically predisposed to but nobody yet knew the answer.
Issues with insurance can oftentimes get in the way of receiving what is needed and that would happen with Dylan. There were certain medications that were denied payment by Dylan’s insurance and to make things worse, medications that were available would cause allergic reactions. What can you possibly do in this case? For a time, it was decided that Dylan would be weaned completely off of all medication. This would, of course, not be a long term solution but rather, a way to establish a baseline for continued treatment. The first half of 2019 was extremely busy for Dylan and the Krings as the number of doctor appointments continued to increase. Trips to the doctor started with the family physician and then a pediatrician. Finally, Dylan would find himself at the neurologists office in Omaha. Dylan’s regression was becoming difficult to miss as the symptoms continued to develop. It was in May of 2019 that Dylan’s older brother graduated from high school and there was extended family in town for the event. There before everyone was Dylan with other nieces and nephews his age. It was easy to compare him to his cousins and see how far behind he had become in his early childhood development. He was still having issues with balance and speech and this event would only serve to make those issues stand out all the more. What was happening to this sweet little guy that was so loved by all?
Finding The Source of Trouble
Michelle’s experience in the medical field, and specifically, as a lab technician would soon prove it’s value for aiding in the diagnosis of Dylan. If nothing else it caused her to be a very formidable advocate for her son. Even though her area of medicine did not include genetics, her background and training in a laboratory setting would eventually help her in the search for answers. As I have already stated, Dylan’s appointments would include a trip to the neurologist. This would happen in July after the neurologist office was convinced by Michelle that they needed to see Dylan for evaluation. The need was obvious. Once there, Dylan would be admitted, spending 17 days as an impatient. He would undergo a battery of tests in hopes of determining the cause of his regression. Michelle stated that the testing included two full body MRIs. Neither of which found anything of significance. There was mention of cerebral atrophy during the first MRI due to Dylan’s seizures but again, nothing significant had been found.
One of the conditions that doctors examined Dylan for was neuroblastoma. This is a form of cancer that can affect children. It would have been serious for certain had this been the diagnosis but Dylan would be cleared of this through a test called a MIBG scan. Dylan came home on a Thursday but would return for follow-up the following Monday. Still not knowing what was taking place with young Dylan, medical staff suspected encephalitis. This could have, potentially, lead to an incorrect form of treatment but that diagnosis would also be proven to be incorrect. This is where Michelle’s experience really came into play and it is another aspect of Dylan’s life being orchestrated. Michelle works in a lab and one of her responsibilities has to do with finding tests for the analysis of rare substances and molecules. She had found a free genetic panel that was available through a company named Invitae Genetics (They are partnered with a company named Biomarin). The panel is used to perform testing on patients that suffer from unprovoked epilepsy and that fit Dylan’s current diagnosis. It was Michelle that asked Dylan’s neurologist to order the test and that was done as a result. Michelle said that she had a “gut feeling” that something was really wrong with Dylan. She is no ordinary mom! So it was on that Monday, during the second admission that many labs were drawn. This included those needed for the genetic testing. At that time, while there at Children’s hospital, Dylan was seen by another neurologist that rotated from one hospital to the other (known as a Locum Doctor). This neurologist knew what she was seeing in Dylan.
This doctor was on the correct path as soon as she laid eyes on young Dylan. Another piece of orchestration perhaps! Her presence changed everything and the direction taken for finding the diagnosis would be changed as a result. This neurologist suspected that Dylan had Batten disease but it wouldn’t be until that Wednesday that she discussed her feelings about Dylan with Michelle. What do you think that Michelle did upon learning about the disease? What would any mom do? Especially one that was already used to doing medical research? She began to do research on Batten disease. A disease that she had not known of up to this point. The more that she read about the disease, the more convinced she was that Dylan had Batten disease. I feel like I have gotten to know Michelle a little bit over the course of doing this story. She is a fierce advocate for Dylan. Michelle is someone that any medical provider would want to listen to and someone who can get things done when there are obstacles in the way. She is someone that a person might refer to as a “tough cookie” … a no-nonsense type of individual. Michelle was not completely ready to process what she knew was the truth. A person’s tough exterior can be melted away in times of quiet, when left alone to their thoughts and feelings. Michelle, more than anything is a mom and she knew at this time that Dylan had Batten disease. In tears, throughout the night, she held Dylan in her arms. This, even before the diagnosis had been confirmed.
So it was on Thursday that more blood work was drawn for the purpose of testing Dylan’s TPP1 enzyme level. This test is specific to the CLN2 variant of Batten disease. The bloodwork for the genetic panel had already been drawn. Children’s hospital contacted Invitae Genetics to see if Dylan’s tests could be processed as soon as possible. In response, they very graciously expedited the testing. The test results for the TPP1 enzyme level were received the following Friday and the genetic panel results came in the week that followed. The results were just as had been suspected, although that didn’t make it any easier to digest. Dylan’s enzyme levels were deficient and the genetic panel showed a positive result for CLN2 Batten disease. Dylan was on a journey and the Kring family had been placed in his life to help him along the way. Dylan had already captured everybody’s heart. This would, of course, include Abby and Zac’s. The entire family was devastated. Even though greater awareness concerning Batten disease has taken place, it is still relatively unknown. None of Dylan’s primary doctors had ever heard of Batten disease. It was even questioned as to whether or not the lab results had been in error. To this, Michelle’s response was simply, “Um, no!” She had complete confidence in the work that had been done on Dylan’s behalf. Michelle stated that all of Dylan’s doctors are willing to do whatever is best for Dylan. However, it is the Kring’s diligent effort in coordinating Dylan’s needs that make a difference. This, with neurologists, and in Dylan’s general care.
Like so many before them, this family scoured the internet for anything that would help Dylan. They looked for information on anything that would help and any clinical trial that might be available. They were willing to travel any distance that was necessary to help this little guy that had captured their heart. Many times over now, I have recounted the details concerning families that receive this awful diagnosis for their child. The Krings at this point had established plans and ideas for what they wanted for Dylan. It seemed now that all of that was gone. This is what Michelle had to say concerning the experience, “Personally, we had never heard of NCL's or Batten Disease or knew of its existence … and I work in the medical field. The diagnosis has been devastating, heart breaking, and life altering. All the things you plan for your baby are gone.” It is so sad to even discuss such things but Greg and Michelle would go on to cancel Dylan’s college fund. Make no mistake, there were many future sacrifices that would be made on Dylan’s behalf, many being monetary in nature. They just didn’t see college as being a viable prospect for Dylan. Wouldn’t it be wonderful if Batten disease could be stopped in its tracks when a diagnosis is received?
There needed to be a discussion between Greg and Michelle concerning this diagnosis. Yes, they had chosen to become Dylan’s legal guardians and he became one of the family but this was a heavy commitment. What about the other two children? There was still much to do in seeing them get off to a good start in life. As has been stated, the Krings had tried to legally adopt Dylan but they were denied. Would they really stand by this child who was not naturally theirs or not even theirs by adoption? How would this impact the family? Both Greg and Michelle had to be on the same page. They had to be in agreement. I am sure that Michelle knew what Greg’s thoughts were but she needed to hear what he was feeling to be sure. She says as much with the following and the following tells you much about Greg Kring. Here is what was said, “Dylan's dad, Greg, and I had to sit down and have that conversation of what our plan is. A terminal diagnosis can rip the strongest of families apart and when the child is not biologically or legally yours, you both have to be on the same page. Greg flat out stated, ‘we PICKED him. He is ours and we will take care of him until God calls him home.’ I knew that would be his answer, but I had to hear him say it, I had to know that we were both going to be there to support Dylan and give him the absolute best life he could have.” As much as I have tried to make this story about a small town family, it is also about a little person whose life has been orchestrated. I agree with Greg Kring that they chose to take in Dylan but I also believe that Dylan was chosen for them. Yes, Dylan’s life has been orchestrated and it has been done so by none other than the Conductor himself. Dylan’s life has already impacted the lives of many. None more so than those who know him the best. That being his family, the Krings.
Just as is most often the case, Batten parents regroup and take action. They do whatever they can to help their little warrior fight the battle that is Batten. Michelle would do the research and find that there was a treatment available to help Dylan. Enzyme Replacement Therapy had become available. While not a cure, the treatment uses a solution that would take the place of the enzyme that Dylan’s body was not producing on its own. The solution called Brineura was available through the company named Biomarin. With ERT, the child receives an infusion to the brain every other week that is administered through a port that is surgically implanted. Dylan had access to this treatment but it would not come without complications. Nebraska does not have a complex drug program and even if they did, the medical facilities nearby may not be adequate for the procedure that Dylan needed. Neighboring Colorado, specifically Denver’s Children’s hospital was a perfect fit for Dylan. Michelle said that they would be gracious enough to allow Dylan to be part of their complex drug program. One of the challenges that was faced in this was that Dylan would have to cross state lines. With Dylan being a ward of the court, he had Medicaid insurance and in that case, Colorado would be out of network. That meant hang-ups with prior-authorization and getting the process started. Michelle would tackle this obstacle which, I know, can be frustrating in itself. She took care of the forms and handled the prior-authorization.
Included as an obstacle was the need to make phone calls to offices of their senator and the governor. This to explain that what was being asked for was an FDA approved procedure. Of course, people baulked at the cost but Michelle stated that she wasn’t going to allow anyone to put a “price tag” on their son’s head. Michelle received the approval. She stated that it took just under three weeks for the approval by insurance, placement of the port in Dylan’s head, and Dylan’s first infusion. That is rather quick by most people’s standards and I am certain that much of this had to do with Michelle’s character. She strikes me as being the tenacious type and somebody who you would want in your corner. Something that also needs to be talked about is the level of commitment needed from Michelle and really, the entire family. I have talked about Batten moms in the past and what they will do in order to give their Batten warrior the best possible opportunity to succeed. Speaking specifically about those who have this therapy available to their children. They will often drive long distances, sometimes into early morning hours, to get their children to the facility where they will receive this treatment. They then drive back home.
A Mom’s Commitment
Michelle would commit to driving Dylan four hours, one way, every two weeks from their home in Nebraska to Children’ s hospital in Denver. She will do this for as long as Dylan is in the program. Dylan’s lifetime. That’s the kind of character that you will often see in a small town but I know that these kinds of moms can live anywhere! Michelle referred to Dylan as a “rockstar” and I think that many of us would agree with that. They love Dylan at Children’s hospital in Denver. The staff there enjoys having Dylan in the program and they are very supportive of the Kring family. Dylan is met with smiles and big high fives every time he shows up for his treatment. The team that administers his infusion is highly skilled and they do a great job with the little rockstar. Truth be known though, Dylan hates the infusions and he fights the process the entire time. Michelle doesn’t mind seeing the fight in Dylan. She doesn’t ever want to see him lose his “fighting spirit”. Michelle stated that the medical staff has started giving Dylan a mild sedative to help take the edge off. This was just better for everyone's safety. The fact that the treatment that Dylan receives in Denver is available with an affordable cost is also part of his life being orchestrated. This was alluded to earlier in regards to the “No” decision for Dylan’s adoption. Had Dylan’s adoption been approved, more of the cost of the treatments would have fallen on the Krings. Much more!
I believe that everyone that is part of Dylan’s life is extremely happy that Greg and Michelle are Dylan’s guardians. Parents rather! Family is not always according to bloodline. The Krings have proven their love for Dylan through an extraordinary kind of commitment. They are showing the same type of undying love for Dylan that countless others in the Batten community have expressed through their actions. This is one of the reasons that I write. I have a list of questions that I ask Batten families. I ask for written responses in order to do each story. One question that I always ask in closing is this. “What is your love for (insert name - Batten child) like?” Of course, I asked Michelle this question. Her response was a combination of what I used for the opening quote and also the following. Here is what she had to say, “Our love for Dylan is completely unconditional. We PICKED him, or maybe he picked us, but there was definitely a lot of forces driving him into our lives.” You could look at Dylan’s presence at the Kring house from different perspectives but regardless of which one that you choose, Dylan belongs with this family. Some of the best stories take place in small town America!
It can melt a person’s heart to think about how Dylan has impacted the lives of this family. He is as much of a little brother to Abby and Zach as anyone can be. Dylan has endeared himself to both of them, just as should be expected. Who could resist his little face? And his charm? The pictures speak for themselves. Michelle stated that Dylan’s diagnosis has been difficult on both Abby and Zac. Zac had an opportunity to travel to Argentina to be an exchange student shortly after Dylan’s diagnosis. Leaving at that time was a very difficult thing for Zac, but it was an opportunity that could not be passed up. The good news is that as this is being written, Zac is on the way home. I know that he is excited about seeing his family again and I know, that includes the little Dylan man! Zac will be attending college at the University of Nebraska - Lincoln in the fall with intentions to gain his law degree. Abby is crazy about Dylan and she is very good with her little brother, both in play and in care of him. This is another special bond. Guess what? Abby has made the decision to finish her education for the purpose of becoming a Medical Laboratory Scientist. This is actually a change in career choice that has been brought on through Dylan’s diagnosis. Well done Abby. I know that you will be one of the best! Abby will be attending the MLS program at the University of Nebraska Medical Center and everyone, I am sure, wishes her complete success!
There are so many people in North Platte and beyond that love Dylan. Included in this bunch is his maternal grandmother Casey Dewey, also known as Dylan’s Memaw! Mike and Julie Snider are Dylan’s paternal grandparents. They are both crazy in love with Dylan, just like many are. Julie likes to accompany Dylan and Michelle on occasion during their bi-weekly trips to Denver. Dylan you are so worth the time! Dylan is, of course, also loved by Greg and Michelle’s extended family. One that I will mention, because I know her through social media, is Michelle’s mom, Roni Pittman. I know that she loves Dylan a whole big bunch! Dylan has a great big family and everyone appreciates what the Krings bring to Dylan’s life. Michelle talked briefly about family involvement with the following, “Dylan has a lot of people in his life that love him. His biological parents love him, they are just not able to give him what he needs. His paternal grandparents and maternal grandmother are all very involved in his life. He has aunts and uncles from his biological family that are also involved, but his day to day care resides with Greg and I.” Did I forget to mention that Greg Kring is an awesome daddy to Dylan? Well, I am telling you now that he is. How do I know these things? I just do! Dylan also has a growing army of followers and people that contribute to his care. How could you possibly resist the opportunity to help!
You can only guess that it is not all “peaches and cream” with Dylan’s story. There are many challenges along the way when it comes to the journey that is Batten disease. There has been a lot of progress in research and Gene Replacement Therapy is said to be coming soon. It can’t come soon enough for the parents of these beautiful children. Each one is a rockstar and they truly are, the reason that I write. It is best to take things one day at a time while planning as best that you can and that is what most Batten families do. One step at a time, one day at a time, without looking too far ahead. That is the way Michelle looks at things. She shared a little bit about their thinking in her closing comments to me. Here is what she had to say, “I cannot look into the future, it makes my head spin. I am a realist and know what this horrid disease is going to take from our precious boy and with that I can only live day to day. Dad (Greg) has a ton more faith than I do, he wants to be a better Christian so that he will be reunited with Dylan when the time comes. I do have faith that God will provide us with everything we need to make Dylan's life the best possible while he is with us.”
So there you have it. This is a story that takes place in a small town but it’s anything but a small story. At least, not in this writer’s opinion. Whatever the future holds for little Dylan, he will always know how much he is loved. He is such a charming little man. I hate Batten disease but I love the ones that battle it. I know that I am not alone in this. I am thankful for the Kring family and I agree that Dylan’s life has been orchestrated, even though he battles this dreaded disease. This little warrior has a lot of living left to do. There is always hope as long as there are people that are working towards a cure for CLN2 Batten disease, and there are! In any case, how many lives will Dylan’s life touch along the way? How many lives will he change? There truly is something special about these children. They capture the hearts of those who take the time to let it happen. Let it happen! I so appreciate every opportunity that I am given to help tell these stories and I am so happy to have Dylan’s story in this blog. Thanks for taking the time!
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