“He is my heart. When he laughs I laugh, when he cries I cry. His good days are my good days and his bad days are my bad days. I have so much love for him that many days it hurts, pains me to think that one day he will not be here with me.”
Why would you continue to read this blog and the stories that are in it? They are all the same. Aren’t they? Another child with Batten Disease. You say to yourself, yes, I get it! Sounds horrific, but their stories just all seem to be the same to me. Not only that but the blogs just seem to get longer and longer. The length shouldn’t matter to those that are interested. You would take the time to read a good book. Wouldn’t you?
A young mum from Plymouth in the UK is faced with a dilemma. How can she possibly care for her son who has Batten Disease? This, while being alone and trying to establish herself in life. It is no accident that her very own mother is trained in the type of nursing that is needed to care for this most handsome little warrior. She performs, in this case and in my opinion, a very selfless act in that she turns over the care of her son to her mum. The bond between the son and grandmum is incredible and the most beautiful story is knitted together through the love that they have for one another. This quiet professional of a lady leaves her profession in order to care for this precious warrior day and night. They literally would cling to one another until this incredibly beautiful angel of a boy was ushered into eternity. Their story is perhaps the sweetest ever told.
Later, and from four Thousand miles away in Chattanooga Tennessee, a young mother is devastated by the findings. Her daughter has a disease for which there is no cure and, it is fatal. All of a sudden her princess has a life expectancy of no greater than 12 years of age. This mom’s search for help leads her to a webpage by which she learns of a clinical trial that offers hope for increased longevity. This, in hopes that a cure can be found. Like the handsome prince in Plymouth, this princess has CLN2 Batten Disease. This trial would provide a replacement for the enzyme that was missing in her daughter’s brain.The only problem was that it was not available where she lived. This help would require that she move seven hours away to Columbus Ohio. Without hesitation, she packs up and leaves behind everything that is familiar to her. She very bravely does what is necessary to get her daughter what she needs to battle the disease. She told me that “anyone” would have done the same thing. I don’t believe that is true. The bond that has been created by facing this battle together, away from home, has become incredibly strong. This little warrior princess is the center of her momma’s world and for good reason. Just one look and you would know why.
The same kind of bond would begin to be developed in Jamestown North Dakota. This, testified to by a women’s actions. A single mother of six children fights to find the answer for what is taking place with her youngest daughter. She struggles, initially, to find a neurologist that will look beyond the obvious. To her, it was obvious. There was more going on with her princess than just the seizures associated with an elevated temperature. Her efforts would find her with a new doctor and testing would take place that would reveal the answer. Her baby doll of a girl has a disease that her mom, in all likelihood, never knew existed. She, also has Batten Disease. The same treatment that was available to the princess from Tennessee was also available to her daughter. The only thing is that the treatment was only available many hours away at the Mayo Clinic in the state of Minnesota. Impossible to move there, she did what she had to do. She would make three trips in two weeks just to set up the treatment, then came the time. Leaving her other children in the care of family, she packed her little girl in the car and made the trip to Mayo for the treatment. That same evening her daughter was released and they made the long trip back home in the dark of night. This, so that mom could attend her oldest daughter’s last track meet of the season. That very same day. She had missed all the others because of her quest to get the answers that were needed for her Batten princess. Her’s is another story worth telling (They all, are worth telling!)
There are so many others. Whether or not there are difficult circumstances attached to the story, each one is significant. I have shared, in the past, a comment from a well known Batten mom named Bekah Bowman. It was written concerning this blog and it would be impossible for me to put into words how much it still means to me. She obviously speaks from experience as she comments, “While you share ‘batten stories’, each family has their unique journey of traveling through such brokenness and every one of those kids and their families have something valuable to teach the world. I love that you continue to share my fellow batten family's stories. They are all incredible stories of courage, pain, joy, beauty, grief, love and more. All deserve to be told.”
All do deserve to be told and will be told as long as I am able (I know there are others that are more capable). This next story is no exception. It doesn’t matter what the individual circumstances may be. Each of these little warriors brings with them challenges that have to be met by the parent or caregiver and most often by an entire family. The biggest challenges seem to be the ones dealt with on an emotional level. As I was beginning to receive information from Hollie Beish concerning her son Conner, she was sitting at the hospital with him. You see, Conner was in the process of receiving his 26th infusions of the chemical that is named Brineura. This chemical takes the place of a missing enzyme that is responsible for cleaning out wastes that would otherwise allow the progression CLN2 Batten Disease. The treatment is done every two weeks. It is easy to tell by doing the math that Conner has come to his one year anniversary since he started receiving the infusions. This was a really big day for him and his family and I know that they are thankful that such an anniversary was possible. This after going through the range of emotions that are connected with being told that your child has a fatal disease for which there is no cure. The treatment, though, was available. As should be the case, these stories most often begin with two people that meet and fall in love. It was no exception for Jeff Beish and Hollie Blades. It all began as Hollie was working as a manager at a local drugstore in Middletown, Delaware. Jeff “just happened” to be the delivery person for Coca Cola at her store. They would often chat with each other when their days at work came together, and of course, there was an interest in one another. This did not escape being noticed by Hollie’s friend, and coworker, who decided to help things move along. She asked Hollie if she would be interested in dating Jeff if the opportunity came about. To this Hollie gave a big yes in reply. Hollie ended up receiving Jeff’s phone number from her friend and the couple really continued to hit it off. They were engaged to be married about a year later and then became man and wife in October of 2006. As their relationship developed, Hollie would make the move from her home state of Delaware to the neighboring state of Maryland. This was where Jeff lived. Hollie’s parents would end up moving there as well in order to be closer.
As with any other couple they had talked about what their plans and dreams for the future would be. There was of course so many things discussed and they both agreed that children were part of their future. Jeff and Hollie both wanted two kids but they took some time first to enjoy their new life together. Their plans began to come together when they welcomed a brand new baby boy into this world. This would take place in June of 2009. They named him Jaxon! He was so perfect to this happy couple. He had all of his fingers and toes, and he was there very own son. Couples look so forward to that expectant day and this day belonged to them and Jaxon. As Jaxon grew, so did the challenges that he brought to this couple. He was so full of personality and also very sweet. Jaxson was the center of attention and he made sure things stayed that way. He stayed on the move from the first time that his legs took flight and he kept his momma busy all throughout the day when they were together. Jeff and Hollie loved being parents and so they continued to work towards completing their family.
The couple did not know at the time but they would soon begin a journey together as their family grew. This was to be a journey that neither of them knew existed. It all began as Hollie found herself pregnant for the second time. They were delighted with the fact that there would soon be a playmate for Jaxon and their family would be complete. The day arrived. It was August the 18th, of 2012. That was the day that a very special addition to the family made his arrival and they named him Conner. Conner was born at Anne Arundel Medical Center in Annapolis, Maryland. He made his appearance into the family a week before he was expected. This because Hollie was having issues with high blood pressure. The doctors felt that labor should be induced and so they did. The delivery went well and before they new it, Hollie was holding Conner in her arms. He was so adorable to look at. He had reddish hair that would later turn to brown and he was so perfect. His older brother had been a big baby and looked to be three months old at birth. However, Conner, by comparison, was much smaller. He looked like a tiny newborn with lots of wrinkles and holding him made Hollie a little nervous. With the exception of a small concern initially over Conner’s breathing everything went just fine. As a baby, Conner was very laid back and lessor of a challenge than his big brother had been. He was a go with the flow kind of a little man and that suited his mom and dad just fine! He completed them as a family and it seemed that everything had come together for Jeff and Hollie. Who wouldn’t agree with that? They were two people that loved each other and they loved being parents.
Not only did Jeff and Hollie have the family that they had wanted but, as the boys grew together, they thrived together as brothers. Just as it was with Jaxon, Conner developed normally and he would reach all of his major milestones. The only thing that was noticed was that his speech was not developing normally as it had with his peers. This, as he approached two years of age. It was at that time that his pediatrician recommended that Conner be placed in speech therapy. Conner would continue to develop normally with the exception of his speech. In that area, he continued to struggle a bit. This, However, was not a cause for alarm. Often times, as we are growing up in a family, we have older siblings that we look up to. This would become the case with Conner when it comes to his older brother Jaxon. According to Hollie, Conner really looks up to Jaxon and did so from the beginning. Sometimes, big brothers gain a hero type status with their little brothers who look to emulate them. This is true in this case because Jaxon is an amazing big brother and he has been from the very start. There were no jealousy issues with Jaxon when his new little brother came into this world and he was so excited to have a brother. In fact, he looked for every opportunity to help with Conner. As a result, there has been an incredible bond formed between the two brothers. Jaxon loves his little brother and the feelings go both ways. Jaxon is Conner’s hero in a brotherly sense. When Conner was a toddler, he would follow Jaxon around and try to do the things that he had seen his big brother doing. Hollie said that, as a result, Conner became a daredevil. There were plenty of bumps and bruises for Conner and several mini heart attacks for her. Hollie sums up the connection between them with the following, “Conner has and still does think Jaxon is awesome. He looks up to him and loves him so much. When Conner gets hurt he will often ask for his bubu (that’s what he calls Jaxon). Bubu comes to the rescue and makes him laugh, forgetting about whatever caused him to cry.”
You get the picture, right? Normal family life is taking place. Sweet memories are being made and plans for the future are being thought through. Every family has their struggles but some are called to challenges that are above what one would expect. This family was in a good place and one would expect things to continue on that way. Things would change though. It was October of 2015 when Hollie received the most frightening call a mother might could get. Conner had a seizure while at school and had been taken to the hospital. As is often the case, a first time seizure is labeled as a febrile seizure. This is the type that is associated with an elevated temperature. This is what the staff at the hospital concluded in Conner’s case. The family was told that this was not a big deal and they were sent home. There were, however, more seizures that would follow and, according to Hollie, these seizures were unprovoked. As would be expected, an appointment to see a neurologist was made for Conner and with this, the search for answers would begin.
Once at the doctor, an EEG was ordered and as you might have guessed, it showed that something in the findings was abnormal. As is most often the case, the journey begins with a diagnosis of epilepsy. You can imagine that this would be so disheartening to any parent. All of a sudden there is a health concern that will greatly affect a child’s life into adulthood. Epilepsy is something that could be overcome and it most often is. Medication was prescribed for Conner and it held the seizures at bay until May of 2016. As is the standard when epilepsy is diagnosed, an MRI was ordered. That had taken place in February of the same year and the results were received a couple of weeks later. Conner’s MRI showed some things that caused concern and as a result, the doctors wanted genetic testing performed. The team of physicians were on to something. They felt that there was something that tied everything together - the speech delay, the MRI results, and the epilepsy. The family would one day find that to be the case, but for now, the search continued. As May of 2016 rolled around, Conner had another seizure like the ones he had experienced before and his medication was increased slightly. This is normal for the control of seizures, however, it was later that month that there was a new development. Conner started having a different type of seizure. Can you imagine what it must have been like as Conner’s parents? How the level of concern continued to increase? How hard is it to carry on with life when you have this type of distraction and concern? Conner began to suffer from atonic, or as they are commonly referred to as, drop seizures. Again, the medication that he was receiving was adjusted. This, however, would not help stop the drop seizures that were occuring. In fact, this was the advent of the scariest time for this young family. I will use Hollie’s own words to explain, “The summer of 2016 was horrendous! Conner had seizures like never before and they lasted so long that he had to be hospitalized multiple times and receive rescue medication each time.” As someone that follows these kids journeys, It is difficult enough to read about the timeline of events that are part of these stories. What is it like to live through the events themselves? Can you imagine laying your child to bed at night after experiencing these things on a daily basis? This, while not yet knowing the cause. It must have provided many a sleepless night.
It was imperative that Conner’s medication be adjusted again. As a team, the doctors and family decided to re-introduce a medication that Conner had been taking before to control the seizures. This got the long and very frightening ones under control. It, however, did not get rid of the drop seizures. The search for answers would continue and with that came a new diagnoses. The doctors diagnosed Conner with Doose Syndrome. This is a rare form of epilepsy that is characterized by seizures that are difficult to control. It can also cause learning disabilities and so it may have seemed like the proper diagnosis at the time. It was, however, just another step in this journey. Hollie said that while all this was going on, they were working on getting the results of a second round of genetic testing. The first tests came back with no findings and so the doctors wanted an epilepsy panel performed. They would do so and the results would raise some big concerns. The panel looked closely at the genes that affect a person’s tendency towards epilepsy. According to Hollie, the panel looks at any genes that, when affected, causes seizures. Some of the genes that were looked at are linked to Doose Syndrome. The testing also checks the genes that come into play with Batten Disease. They would not get the results from the 2nd set of genetic tests until October of 2016. That was a year after Conner started having seizures. With the results, Conner’s family received word of a possibility that Hollie would call “downright scary!”
They were told that Batten Disease was a possibility when the results came back, but also that it was unlikely to be the case. Jeff and Hollie were also told that more testing would have to be performed to rule out Battens. This time it would involve genetic tests for Jeff and Hollie. Conner would also need additional blood work done. They were encouraged to not go home and research the disease. In the meantime, receiving the results would take three months when it should have taken only about three weeks. You can only imagine the extra anxiety that this caused this young family. There were multiple mistakes that were made by those responsible for the testing and blood had to be redrawn. I had made a remark to Hollie about how stressful the wait must have been. Her reply says it all, “Yes, very difficult! Our family was falling apart and we were all so stressed out and worried. Conner was also declining rapidly during that time. I hoped the results would come back saying he didn't have it, but I knew in my gut it was Batten. Being in limbo was the worst. Watching him decline and not knowing how to help him or what to do was impossible.” I don’t know why doctors tell a parent to not research the disease. They should know that every parent will. Hollie described what she had seen when she did some research and also, what her response was, “I saw the words fatal, genetic, no cure, no treatment, progressive, average life span 12 years old. I was scared to death and hoped with all my heart it was something else, anything else.” They would actually receive the news over the phone. How very impersonal. This left them devastated and angry and who would think anything but that this would be the case. People sometimes make mistakes but It took way too long to get the results.
According to Hollie, Conner had two variants on a gene that caused NCL (Neuronal ceroid lipofuscinosis), or as it is commonly referred to as, Batten Disease. In order to conclude that this was possible, both Jeff and Hollie would have to be tested. This because they would both have to be carriers in order for Conner to have Battens. Blood was also to be drawn from Conner to see if he was deficient in the enzyme that is missing when Batten Disease is present. The testing was complicated by the fact that Hollie carried a variant that had never been seen before. After what must have seemed like forever, the news that they had received over the phone was so disheartening. Conner had CLN2, Late Infantile Batten Disease. It took over a year from the time of the first seizure until they finally received the diagnosis. How the tension must have increased with time and circumstances. The results of Conner’s tests came back the following January. His enzyme level was deficient and he was given the diagnosis of Battens. This makes me wonder what the Christmas season must have been like for this dear family. I have done other stories where the outlook for these families goes from bad to worse to the unimaginable. One can live with epilepsy and even with Doose Syndrome. We cannot, however, imagine what it is like to finally be told that your child has Batten Disease. A disease that they had never even heard of. And, it was fatal.
What is it like to receive this kind of news? What was it like to end the phone call and to be left there alone together in the silence of the family home? By instinct, knowing that difficult times were ahead, and yet holding out hope that the news could be better. That hope dissipated by that which you wished you had not heard. Hollie described what she was feeling in the most telling fashion, “I remember feeling like I couldn’t breath, my legs were like jello holding up what felt like 500 lbs. I felt sick to my stomach, nausea took over. It was the worst day in my 35 years on this planet.” There is a common theme that runs through all of the stories that I have done so far. It starts with the devastating news that brings total shock and despair. Your child has a fatal disease for which there is no cure. Then, after processing the information, determination takes over. With that comes the will to do your very best for your little warrior prince or princess. Undying love and tender care become the order of the day. This would all begin with Conner’s parents as they processed the information. Like every parent or caregiver mentioned before, they would begin to do what is necessary. This is how Hollie would put it, “Now I will say, a few days later, I felt a weight lifted. We now knew what we were facing and what to do next. It was time to fight for Conner’s life! The results came on a Friday and we spent the weekend taking it all in but on Monday it was time to get to work. It was time to fight for this precious little boy and that is what we did and will continue to do.” And they would, in fact, continue to fight for Conner. This would take the help of family and community of caring people from all walks of life.
Like with most every family confronted with this awful diagnoses, Jeff and Hollie searched for what they could do next. How could they help Conner fight? The answer came in the form of a clinical trial that would replace the enzyme that was missing in Conner’s body. This was taking place in Ohio at Nationwide Children’s Hospital. It would involve traveling over 7 hours one way. If Conner was to be accepted into the trial, it would require traveling that distance every two weeks for each cycle of the infusion. The family first traveled to Ohio in March of 2017 and learned that they could not yet get access but that a spot may be opening soon. They also learned that they may have to wait for approval of the drug from the FDA and that wouldn’t happen until the end of April. They had to deal with the fact that their little man was digressing this entire time as they waited. This had to produce many anxious feelings for this mom and dad. Still, they did everything that they had to do to make sure that Conner would be approved. This included making sure that he had all his therapies while constantly checking on the approval of the drug. Finally, on April the 27th of 2017, they received the call that brought some exciting news. The drug, which is named Brineura, was now FDA approved and Conner was accepted into the trial. How exciting!
Conner had his surgery to have the port placed in his head at the end of May and he would receive his first infusion on June the 1st. His first time with receiving the infusion did not come without a struggle as swelling around the port was an issue. It took nine tries to access the port. Poor little Conner screamed with pain which in turn made mom, of course, cry out for her son. It was an emotional day but those things wouldn’t happen all the time. The process would become easier but that didn’t mean that there wouldn’t be sacrifices made. As I previously stated, the trip for each infusion was around seven and a half hours one way. Like with every child that undergoes the process, it has to be performed every two weeks. Conner and his mommy would have to be away from home for three days each time. Of course, Jeff would have to continue to go to work for his family and Jaxon couldn’t miss school. This would mean time away from one another and I am sure that would be difficult. This would take place for six months before any changes would happen.
Driven by love, a young mother is undeterred by time and distance. She sets aside the life that she knows and does what is necessary to help her precious warrior battle. This, as dad holds down the fort while working to provide. There are very few kinds of love more beautiful and none more compelling than this. It is that kind of love.
Although a routine would be established it would only be made easier by those who provided help and support. Those people would include family, friends, the medical staff, and the drug company. Things would even go well with approval from the insurance company. Hollie’s father, Bruce, had recently retired and was able to accompany her and Conner much of the time on these long trips. (There are many other stories that are similar in terms of time to travel. You see, Batten Disease, CLN2 variant alone, really isn’t that rare. From London to Ohio, there are others who make that trip in varying distances. Some have even left behind the home they love.) One person that needs to be mentioned is Conner’s older brother Jaxon. All of a sudden, the number one son in the house needed to, in many ways, take a back seat to his younger brother. This because Conner needed all of this extra attention. Jaxon still is an awesome older brother and Conner’s hero. Jaxon would be assured of his family’s love for him in this difficult time through words of encouragement and affection. This, while receiving the explanation of Conner’s circumstances. Fortunately, the family had the help of Jeff’s sister, Lisa, during Hollie’s absences as she lived right down the street. What a blessing! It would be a very difficult time for the whole family but Conner was so worth it. Just look at him!
Hollie stayed committed to to this demanding routine for as long as it took before a transition to Children’s National Hospital in Washington DC took place. Conner was to be the first child with CLN2 to receive the infusion and the staff would train specifically for him. He is so worth it. There is now one other child being treated at the facility in addition to Conner. This is what Hollie said concerning the change in hospital, “The transition from Ohio to our home hospital in DC also went smoothly. Children’s National trained and prepared for many months and it was clear they worked hard to make it as smooth and easy on us as possible.” As stated at the beginning, Conner has just reached his one year mark. That means that he has been receiving his treatments in DC for half of that time. I can only imagine how much it must mean to the hospital staff to be able to help Conner in this way. I just bet that they are very attached to him and the people there must look forward to seeing him every two weeks.
A Staff of dedicated and caring medical professionals train specifically to treat a child in desperate need of the care that he receives. Their team is part of a new treatment center within the U.S. and the response to the opportunity is the same as the rest. Their response to Conner is that he is so worth it, and you know what? He absolutely is!
How is Conner doing? According to Hollie, Conner is doing very well with the infusions. They saw some decline in him at first but he has actually made some gains as time has moved along. Hollie said it was at the four month mark that Conner began to become more vocal and alert. He hadn’t declined any more as of eight months and his vocabulary continued to thrive, as did his level of alertness. He is now seizure free at twelve months and his tremors have decreased a lot. His dexterity has improved and he can reach for objects as well. Conner walks with a gait trainer and can crawl short distances. He is even able to stand at the couch. He can kneel without assistance and sit up by himself for short periods of time. If it wasn’t for the Brineura, I venture to say that none of this would be happening. In Hollie’s own words, “I can’t imagine where he would be right now without it.”
Conner was granted a wish through the Make-A-Wish Foundation and this took place in April of 2017. Conner is a little Star Wars fanatic. How cute! His wish was to do battle with Darth Vader at Disney World and he would, of course, get his wish and then some. Although he didn’t battle Darth Vader at Disney he would do so at his send off party that was attended by the 501st Legion. The members of the 501st make appearances wearing authentic replica costumes of Star Wars Characters, like Darth Vader. These guys are first class and their presence made Conner’s day. While at Disney, Conner attended the Jedi Training Academy. He appeared on stage with Darth and ended up battling another Star Wars character while at Disney. The family stayed at Give Kids the World Village and they would attend Universal Studios and SeaWorld as well. You just know that Conner and his entire family had a blast. I think that it is so wonderful that there are people in this world that show that they care about these kids the way that these organizations do!
What is life like for this family going forward? This is part of what Hollie had to say, “Batten Disease has greatly affected our family in a variety of ways. In a way it has brought us closer. When you know your days together are numbered it makes it that much more important to spend time together making memories. We all help each other and make sure Conner is as happy and healthy as possible. We understand each other and what we are going through.” I always feel that it is a wonderful thing when the struggles in this life draw us closer together. I feel that is the way that it should be. I know from experience that having a special needs child in the house affects siblings. It stands to reason that Jaxon’s life has been impacted by his brother’s plight. Hollie says that they try to make Jaxon’s life as normal as possible but she has expressed the fact that Jaxon is having to grow up faster through all of this. As I mentioned earlier, Jeff and Hollie do their best to provide a foundation of love and understanding for Jaxon. I just know from my chats with Hollie that Jackson is a rockstar of an older brother and he will continue to be a hero to Conner. I don’t know this for a fact but I am thinking that I am on the right path by telling you this. I think that there will be a little bit of a reversal of roles as Jaxon sees his little brother continue in the battle. I think that Conner will grow to be Jaxon’s hero. I don’t think that there will ever be another person that will impact Jaxon’s life in the way that Conner’s life will. Of this, there is no doubt!
There is stress far and above what would be experienced by other families. As one might imagine, the financial concerns are greater. The fact that Hollie is unable to work because of Conner leaves a larger burden on Jeff. He is responsible, as the breadwinner, for the families income and and many of Conner’s medical care expenses. Dad has to work long hours but I have to believe that he assumes this heavier burden, willingly, out of the love that he has for his family. He looks to be a wonderful husband and father and I think that we would be good friends. Hollie is a warrior mom. She is left to care for Conner and to attend to his basic needs. There are always appointments to get to on top of all of her other responsibilities. Because of all the extra demands, both financially and otherwise, they are not able to do as many things together as other families might. When they do go out, there are restrictions and it requires extra planning. Certain pieces of Conner’s equipment has to go with him. Some of the activities that are only appropriate for Jaxon are attended by one parent only. Hollie has had to grow in the area of time management and she is always on the go. By her own admission, she still struggles in this area at times. I know that she sometimes wishes that things could be easier, but just like Jeff, she loves her family and she does what is necessary to get through each day. She has learned how to prioritize things in her schedule in order to accomplish every task that needs to be performed. She explains it in this way, “My priorities have definitely changed with all of this. I do housework and run errands while the kids are at school that way when they are home I can focus on them. I spend the majority of my time with my immediate family, mostly at home where Conner has everything he needs and is happy and comfortable. I do not stress the small stuff like I used to. As long as everyone is happy and taken care of, all is good.”
As a family, they take each day as it comes and they do so for each other. Looking too far ahead causes Hollie to feel overwhelmed. She is very practical in the way that she approaches the circumstances that surround them. Hollie has this to say, “I just do what I have to today and leave tomorrow’s worries for tomorrow. I take problems as they come and look for solutions. I have no way of knowing what research or treatments are in the future so I just hope that something changes before it’s too late for Conner. The same goes for challenges. I take them as they come and I smile and do my best to stay positive through them. We discuss them as a family as they come and help each other face them and figure them out together.” As a couple, Jeff and Hollie keep Jaxon in the loup but they are careful in what they say to him. Jaxon loves his little brother, no doubt, to the moon and back! Both of their kiddos are very special. Each in their own way. Hollie adds the following concerning her two special kids, “I am amazed by Conner’s strength and bravery! I am so proud of Jaxon. He is empathetic, caring, and sweet. I am impressed at how he is handling everything.”
The people within Jeff and Hollie’s community have been of great help to this family. They live in a small town and the people there have been very supportive. They know who little Conner is and awareness is being spread through his Facebook page which is called Fighting for Conner. His Batten Disease shirt is popular and a lot of people wear them for Conner. In fact, just about every teacher at his school has one. I know that he is a very well loved little man by all who know him. Friends and family worked together to put on a huge fundraiser for Conner and the Star Wars characters from the 501st Legion were there to help! They stay in touch with the family and also let them know anytime there is an event so that Conner can be there. Conner is such an amazing little man that he is even loved by Darth Vader. Go figure! Hollie says that thinking about all of the support that they have received still causes her emotions to get stirred up. She has this to say in regards to the outpouring of love and support they have received, “We have truly been blessed with so many amazing people surrounding us with love.” These kids have a way of turning regular people into those which are amazing!
A Family, a town, a medical community, a teaching staff, and even a legion of Star Wars characters. They all work together in support of one incredibly charming little man. Why? Because, he is so worth it. This most handsome little hero produces, in all of us, that kind of love and for that reason, he cannot be denied.
Again from Hollie in closing, “I love Conner as any mom loves their child. I would do anything for him, give my life to make him well, to allow him to have a typical childhood where he can run and play, talk, and read and write. However I will say, this horrible disease makes it easier for me to just love him without worry. I don't have to worry about him doing homework or chores, behaving badly or disciplining him. I just get to love him and play with him, and have fun. He gets to do what he wants and I can give him everything without having to worry if it will impact him negatively, all the stuff I have to worry about with my 8 yr old.”
I am the parent of an adult who has special needs. He has been with me practically every day of my life for the last 28 years. The bond between us is incredible. He needs me and his mother for some of the most basic things and I think that has increased the bond between us. Demonstrating the love that I have for him is one of life’s greatest pleasures. I only make comparisons to what a Batten family goes through in an effort to relate to them but afterwards, I remain honest with myself. I really don’t know what it is like to be told that your child has a terminal disease. I think that part of my reason for writing is because it serves to help me understand. I continue to be amazed at the level of devotion that these parents show their children and I also am amazed by these kids that I have grown to love. Their resilience and the things that they teach us about themselves and those of us who follow them. They change our perspective about what is important. What is to be valued. They are able to impact people’s lives like none other. At least that is the way things are from my point of view. This may seem a little out there, but I believe that these kids are sent to us for a purpose. Their lives, even if cut short, will impact people as none others would after a lifetime. They change us. This is where my heart is and this is why I write. For this reason, Conner is my hero also!
Blogger and Advocate
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. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of 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