“Having an almost 2 year old and 4 month old twins, I was overwhelmed! But I felt blessed, because they were ‘healthy’ and so on this day I chose the mantra ‘They're healthy, they're healthy’. I'll never forget that moment and how I felt.”
Batten Mom and Advocate
It is always appreciated when I come into contact with people that can provide insight for an area that I wish to write about. While I am a parent to a young adult with special needs, I still have much to learn about what it would be like to care for someone with a fatal childhood disease. What is it like to experience what these families go through on an emotional level? I know that the answer would seem to be obvious but understanding can help lead us to empathy and that is one of the reasons that I write. There are certainly other types of difficult circumstances that living in this world can bring our way. That is often the nature of living on this planet. Even so, watching a child digress because of a terminal disease that you have no control over is perhaps the worst thing that a parent can go through. Especially with the knowledge of what the course of that disease will bring.
I have had a couple of online friendships with people that have provided home healthcare to children with Batten disease. I always welcome it when they are allowed to share about the experience of caring for these dear ones (these kids are the most special). I was pleased when I met yet another person who cared for children with fatal childhood diseases. Her name is Linny Price and hers has become another valued friendship. She is not only a very neat person but she is also a retired nurse who cared for kids with rare and fatal diseases. Added to her experience of caring for these kids is the grief that she experienced with the loss of her husband. Everything together helps to form her perspective on things. Here is some of what she said in comments that she had made, “Being a nurse who worked with terminally ill children, I don't think there is anything worse than that. Even when my husband died prematurely, I was able to work through my grief, although it took six years. But it is different when it's your child. Conceived out of love, a creation, YOURS, an unconditional love. All you ever want for your children is the best. But when you get a diagnosis that is not possible to fix, your heart breaks. Why? Because you would do anything to save your child.” She would go on to continue those thoughts by adding this, “A mother or father would give their life to save their child, however, at this time in our lives the research is slow and that makes a parent feel so guilty that there's nothing that they can do.”
Sometimes, I look at these kids and think about how beautiful they are. My mind then wanders to the fact that they have this devastating disease and they are automatically endeared to my heart. As a result, I long to celebrate each one of them as their families share their journeys. I try to focus on the positive details of undying love and devotion that exists in each one of these kid’s stories but the facts concerning what is dealt with are often devastating. And still, it is during these times that those details are most clearly seen. To me, what is dealt with will always be above that which is of the ordinary. I have adopted a phrase as of late and have used it in my writing on occasion. It goes like this, “Batten families are made up of ordinary people that have been asked to do that which is extraordinary. In the process, they become completely special.” This is an outsider's perspective of course. The people that make up the Batten community will tell you that as parents, they are just doing what is required to care for their child, or children in some cases. While that may be true, the things that are required of the parents or caregivers are often times well above that which anyone would expect.
I have noted the things that I have observed about the Batten community on several occasions. One of the things that I have noticed is that different people have different ways of dealing with the heartache and the circumstances that they are surrounded by. It doesn’t matter what a person’s social and economic status is, the battle that is Batten disease is a traumatic experience. The big thing that I have noticed is how each parent regroups and commits to doing their very best to help their child battle the monster that is Batten disease. Each one does what they are able to do and the members of the Batten community do what they can to help one another through this difficult challenge. All have an important role to play and they do so, for the most part, behind the scenes in chat windows and over the phone. Sometimes, people have the means and the ability to do more.
Linny mentioned that more needs to be done in the area of research and several of the families have taken up the task of raising funds for this upon themselves. This, because their cause has been neglected by others. Here is what Linny said about this, “These rare diseases don't get the amount of money needed for research in order to to find a cure. I think that it's a great idea when foundations are set up to raise money that otherwise would never be gotten.” These foundations are often set up by the families that have the means and capability to do so. In the end, they are not only doing what they do for their own children, but also for others that are affected with the same disease. Foundations are a fantastic way to make a difference in the battle that is Batten disease but there are also other ways in which people have put their “boots on the ground” so to speak. This next story is about a family that took action in an effort to save their own children. A father who was used to fixing things and finding solutions would do everything in his power to help his own son. This, after he and his wife received the alarming news that their child had Batten disease, a condition that they previously did not know existed. This is a story about an upper middle class family that has been on a journey that never could have been expected. Their lives would be changed forever as a result. This, in a profound kind of way.
Planning for the Ordinary
Tracy and Jennifer VanHoutan had the desire to be just an ordinary family, raising children successfully with all of the normal milestones and events taking place. Two of their children, Noah and Laine, are now the most beautiful Batten angels that people will ever know about. Both of their lives changed the lives of their family forever. The actions that were taken as soon as Noah was diagnosed are extraordinary and Laine’s diagnosis would only increase the intensity of the search for a treatment and a cure. There was much that was accomplished as a result of the actions that were taken and those actions would helped many future warriors who battle Batten disease. I think that it is safe to say that the lives of Noah and Laine have, and will continue to, affect the lives of others in a big way. Neither will be forgotten because they would both be impossible to forget. I met Tracy and Jennifer in Nashville, Tennessee while at the Batten conference in 2018. I was immediately impressed with them upon our meeting and I felt that I was in the presence of people that are very special. The more that I have learned about them, the more I know this to be true. This, especially after receiving the details of the story that I am about to tell. I hope that I can do it justice.
Just as it is in most every case, a love story begins with two people that meet and fall in love. Make no mistake, this is a love story. Tracy VanHoutan and Jennifer Farnaus were both career driven people, and both had attended college. Tracy went to the University of Iowa and Jennifer attended Loyola University Chicago. Jennifer had traveled to Rome where she had spent a year of her life after graduation and she was then back home. It was 1996 and the Chicago Bulls were in their heyday. Michael Jordan, Scottie Pippen, Dennis Rodman. Do you remember all those guys? You should! They were dominant that year and would go on to become champions of the NBA. It was during the playoffs that Tracy and Jennifer would meet at a mutual friend’s house. Craig was Jennifer’s high school friend and Tracy’s fraternity brother from college. Tracy and Jennifer were both there to hang out and watch the game. Neither knew at that time that their lives would be spent together. They certainly didn’t know what that life together would entail but there was an attraction towards one another and it is certainly easy to see why that would be possible. The future couple started to “hang out” together that summer and would go on to have their first date in the later part of August 1996. Jennifer would tell me that they had no expectations except for finding their way in the world. Both would become gainfully employed with a successful future in mind. Tracy would gain a position as a Trader with the Chicago Board of Options Exchange and Jennifer would begin to work in residential and commercial real estate marketing. They were finding their way and that way would include each other. The young couple would date for five years, after which, they became man and wife.
Life as newlyweds continued, and both continued to build their careers. Every couple looks forward to buying their first home and this would take place for Tracy and Jennifer in 2003. They bought a house in the suburbs of Chicago and it was their very own. Things were really starting to take shape. More times than not, a big part of marriage involves having a family together. It is amazing how things change as children come along. They change our circumstances and they change who we are as people. This was about to happen for the VanHoutans in a big way. Jennifer became pregnant in 2003 and she would go on to have a normal pregnancy. As Spring of 2004 rolled around, so did the event that Tracy and Jennifer had greatly anticipated. That being the birth of their first child. They had a boy and he would be named Noah. After a moderately difficult delivery Noah was watched in the NICU for a few hours. Doctors wanted to continue to monitor Noah’s heart rate after he was delivered, and they determined that he was just fine after this short stay. Baby Noah was the most perfect little man. He had all of his fingers and toes and such a cute little nose. Jennifer would stay fixated on her baby’s little features as she could not take her eyes off of him. He was all boy but oh, so sweet. The only thing that drew her attention away from baby Noah was the time that it took to look at her husband Tracy. This, as he looked on with extreme pride over their new child. Tracy must have felt like he was on top of the world at this point. He had a beautiful wife, a house, and a career path with tons of potential. On top of it all was the fact that he and Jennifer had brought this life into the world together. He had a son.
Noah would develop normally as he grew into toddlerhood. He was healthy and he brought so much joy to everyone who was a part of his family. He could often be heard giggling as he enjoyed having childhood fun. He loved trains and spending time with dad who was always on hand for a wrestling match with his adorable little man. Noah also loved getting into mischief on occasion but the innocence that he possessed as a child could clearly be seen. There is something about the connection that little boys have with baseball and Noah was no exception. It is clear that his parents fostered a love for the sport from a very early age. The Chicago Cubs were much loved at the VanHoutan house and that love was quickly passed on to Noah. He could often be seen wearing his toddler size Cubs hat, as well as, other cubs apparel. The family dreamed that Noah would one day pitch for their beloved Cubbies as he helped them win a World Series. Life was good and the experience of having their first child would lead to a desire to increase the size of their family.
Filling Out Their Family
Tracy and Jennifer wanted another baby and they were happy to receive the news that this was going to happen. Jennifer was pregnant once again. This news came about one month after Noah’s first birthday and it would be shortly after that when they would receive some additional news. Jennifer was going to have twins! Apparently, she had told her mom when she was young that she would one day have twins. Her little person prediction had come true and the house was filled with excitement over this news. Perhaps the excitement was mixed with a little nervous anticipation over what the future would hold. It would only be months away that their house would be filled with children and their attention would be divided by three. Things were taking shape, and everything was as it should be. Once again, Jennifer’s pregnancy would go smoothly overall and she would receive plenty of help during that time. Tracy and Jennifer had been in the middle of a large remodel of their home and they were living with Jennifer’s parents as the house was being worked on. I am sure that Noah loved all of the extra attention that he had been receiving while at his grandparents’ house. Grandparents are cool and they are fun to be around when you are a little person! The time would come for the next big event to happen in the lives of the VanHoutan family. Noah was only twenty months old when his mommy gave birth to twin sisters. They would be born in January of 2006 and were named Laine and Emily. Both were beautiful and just like their big brother, they both came into this world with all of their fingers and toes. Both were covered in brand new baby skin and they were oh, so perfect. Jennifer had carried her girls for thirty-seven and a half weeks and she was overjoyed with their arrival. Mommy and her twin girls would arrive home two days after they were born and all at once, this family was a family of five people.
Just as one would expect, things would be a little bit overwhelming for Jennifer and dad too at times. They had their hands full. Literally, with little people. The attention required between Noah and the twins was divided but again, they were still living with Jennifer’s parents and that was a big help. There was a lot of joy and laughter as everyone enjoyed this experience together. Tracy, Jennifer, and their children would move back into their updated home nine weeks after the twins were born. Noah had learned to walk when he was ten months old and he was all over the place by the time his sisters were born. Not only was he getting around, but he was also getting into mischief on occasion. Noah was all boy! There was one incident that Jennifer will never forget. Here it is in her own words, “One particular moment I remember fondly was when we moved back into our home with a newly remodeled kitchen - while I was taking care of Laine & Emily in their bedroom I heard a mischievous laugh coming from the kitchen. Noah, almost two, pushed a chair up to the sink and climb up and turned on the faucet and decided to give our new kitchen a bath!” Noah, what were you thinking? Keeping up with Noah while also taking care of four-month-old twins was a challenge for sure. Jennifer said that she felt overwhelmed at times but also said that she felt blessed. Her children were healthy, and she had no reason to believe anything other than they would continue to be. Both she and Tracy were looking forward to all the life events that would take place as these three little people continued to grow and develop. Things were good at the VanHoutan house and life together was full of potential.
After about a year, and being the oldest, Noah had a head start on all things as far as his development was concerned. He would soon turn three years old and was at that time attending preschool. It was while Noah was at preschool that certain things were noticed. One thing was that he was impulsive and the other was that he had an inability to sit still. It was also noticed that Noah was slower in responding when asked a question. It seemed that he was a little slower in the development of his speech when compared to the other children. As a result of all of this, Noah would be evaluated at three and a half years of age within the public-school district. It was determined that he fit some of the criteria of a special needs child. What would be alarming to any parent was that Noah was apparently having tremors. The VanHoutans would, of course, have Noah seen by doctors which included his first neurologist. After seeing this doctor, the VanHoutans would be told that the symptoms that were being seen were normal for a boy. They were assured that Noah would grow out of them. This assumption would turn out to be false as something even more frightening would happen with little Noah in just a few short months.
It would be four months prior to Noah’s fourth Birthday that an event would take place that would shake any parent. Without warning, Noah collapsed and would stop breathing. After being evaluated by medical professionals, it was felt that Noah had probably experienced a seizure. Nobody goes into parenting expecting something like this to happen. It is a complete shock when it does and the memory of it happening never leaves you. It would not be long, just a couple of weeks, before Noah would have another seizure. It is very common for all children to receive the diagnosis of childhood epilepsy when seizures continue to happen. That is what would take place with Noah and bringing the seizures under control would become the objective. The fact that it was difficult to control Noah’s seizures with medication would lead one to think that there was more going on than simple epilepsy. Finding the right doctor who would help in finding the answer would prove to be difficult for the VanHoutans. The pure joy that had been present in the home was gradually being replaced with a mixture of love and deep concern.
Treatment with medication would be coupled with testing and an MRI of Noah’s brain would be performed about nine months after he was diagnosed with epilepsy. The results of the MRI would show that there was atrophy, or shrinkage, that had taken place in Noah’s brain. There was no cause associated with the findings and there were other signs that something very serious that was taking place. Noah was starting to digress in his ability to perform simple tasks. Things like eating with a fork and brushing his teeth were now becoming difficult. All of this together must have been difficult to be a part of. Major problems, never expected, were taking place with their precious son. More than just epilepsy. The VanHoutans needed answers and finding them started with the help of Jennifer’s friend. Her stepfather helped connect Tracy and Jennifer with the Chief of Pediatric Neurology at Duke University in North Carolina. It would be just weeks later that Jennifer and her mom Jacque would take little Noah and travel to 850 miles by car to Duke. Once there, Noah would undergo a two-week evaluation in which he many different tests. He would undergo every test that the medical team felt was associated with Noah’s symptoms. These would include a skin punch and blood tests that would be sent to two different labs. Another thing that was done for Noah was that he was started on the Ketogenic Diet for the purpose of helping to control the seizures. This diet has helped others and it would appear to help Noah initially. The fog that had surrounded him looked like it had been lifted. There was a measure of optimism as dietary change seemed to bring with it a good result. The seizures, however, would not go away. The doctors tried to take away one of Noah’s seizure medications while they were at Duke, but his seizures continued. Jennifer and Jacque returned home with Noah two weeks later and Noah was doing better but was not seizure free.
Still on the horizon was the day that Noah’s test results would come back. Once the results were received, life at the VanHoutan home would change forever. Their lives, and that of their extended family, would not be the same. Both were career-oriented people who also wanted a family. They expected to experience normal American things, being lived out in everyday American suburbia. Tracy and Jennifer would soon find themselves being a part of a community that they did not yet know existed. They had no idea how their lives would be impacted, nor could they know how their lives would impact the lives of others. It would be about a couple of weeks after the trip to Duke university, on Saint Patrick’s Day of 2009, that things would change forever. The family was sitting down to enjoy their Saint Paddy’s day meal and Jennifer had prepared a Ketogenic appropriate meal for mister Noah. That is when the phone rang. It had been about sixteen months since the time that Noah had experienced his first seizure and his family was about to learn the truth concerning his condition. The phone was picked up and Noah’s neurologist from Duke was on the other end. The results had come back and the findings were that Noah had been diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis, now more known as CLN2 Batten disease. A holiday that was meant to be enjoyed together as a family would forever become a reminder of a day that will never be forgotten. They would begin to do what most any family would in this day and age. They started to do research on the condition. Here is how Jennifer stated their respond to the news, “Over the next few hours as we researched the disease, our world quickly crumbled. It was never the same again.”
It was a fact that the VanHoutan family would never be the same again. The life that they had planned and talked about sharing together would not come as it was expected. There would be sweet times ahead for sure but they would be mixed together with heartache and grief. Tracy and Jennifer would experience things never considered and for them, not yet known about. In the midst of their own personal struggle, they would discover a purpose and a path to display the leadership qualities that they possessed. Everything that they would become as a result of the news about Noah would begin as Tracy opened his laptop to do research on his son’s diagnosis. As it is with most any set of parents that receive the news that brings devastation, Tracy and Jennifer wanted to know what the mechanisms of Batten disease were. It would all begin with a search of the internet and the result would be what anyone would expect. They searched for answers while maintaining calm for the sake Noah’s sisters but inwardly they were very alarmed. Their world was beginning to crumble as they learned that Noah’s condition was fatal. No cure or treatment was yet available.
Coming to Terms
Together, the VanHoutans would learn everything that they possibly could about the disease that their young son had been diagnosed with. The information that they would find all seemed to be unreal. How was something like this possible? Noah was, up to the time that symptoms appeared, so healthy. How could there be no cure, and why was more not being done to find a treatment and a cure? Right away, they would connect with the Batten disease Support and Research Association (BDSRA) and they would also set up their own non-profit foundation. This would take place only weeks after Noah was diagnosed. The foundation would come to be known as Noah’s Hope. The VanHoutans were fortunate to have their Batten disease education jump started by a family friend who compiled a pair of five inch binders filled with recent scientific publications on different forms of Batten disease (also known as NCLs - Neuronal ceroid lipofuscinosis).
Jennifer would tell me that her husband is a very binary person. By this, I think that she means that Tracy is methodical and a problem solver. In fact, she stated that he believes that for every problem, there is a solution. He is analytical in his approach to finding those solutions. Tracy grew up in Iowa where he often times worked on farms. There are always things on farms that are broken, and which require fixing. He was used to fixing things that are broken and he was not about to sit around and wait for others to fix the situation that surrounded his son. Both Jennifer and Tracy worked full time as Noah received his diagnosis. Jennifer said that her husband would work late into the night on his research as she managed Noah’s seizures. As I have stated before, I am always impressed with Batten families and how they regroup after being giving the news that brings complete despair. What is done for their children as they do so is extraordinary and completely special. Everyone will have a part to play in the community that they find themselves being a part of. Some have the ability and the means to do more and, in the process, they will help many. The only thing that registered with Tracy at the very beginning was how he could go about helping his son Noah. In the process, both Tracy and Jennifer would end up helping many others.
And still, it was sweet Noah that was the center of their attention. As a family, they did everything they could for Noah while also providing a stable home environment for their two daughters. Heartbroken but resolute, they pressed on. Jennifer has shared with others what the environment at home was like through what has been written for the Noah’s Hope website. Here is an excerpt from that page, “When we learned that Noah had CLN2 Batten disease, our world literally fell apart. As we frantically tried to learn as much as we could about his terrible illness, we worked hard to keep everything at home peaceful and uneventful. It was very important to us that the girls would continue their busy lives with as little interruption as possible. They were our shining lights of joy amid our new chaos, and we went to great lengths to keep up their dance classes and play dates.”
One thing that I have observed and have come to know is that there is most often a special bond that exists between twins. Brothers or sisters, one of each, it doesn’t matter. I think that the bond is maternal as they really begin the relationship in mom’s tummy. Where one twin is, you will often find the other. They play together. Grow up together and get into mischief together. The bond is one that lasts a lifetime and it begins even before birth. As Noah began to battle, the relationship between Laine and Emily would continue to grow. Jennifer referred to what she had seen between the two as a “twinship”. These two little girls were together all the time. So much so that it was difficult to keep even their names separate. Ballet class and tea parties, you name it! They did everything together and they even shared a room. But before all was said and done, Batten disease would have a tremendous impact on the relationship and circumstances surrounding these two sisters. Tracy and Jennifer still had no idea what all would take place with their family or what the future would hold. The VanHoutan just knew that they could not sit back and do nothing.
Tracy’s actions which resulted from his research were most notable. Not only had he collected the data on his son’s disease, but he acted on what he found. He spoke frequently via phone to the Executive Director of BDSRA, who was also a parent who had lost a child to Batten disease. Tracy also made calls to a researcher who was a member of his Alma Mater, the University of Iowa. It doesn’t end there. Tracy went to where the research was actually taking place. He would travel to both England and Germany to identify scientists that were working on developing therapies. This, to replace the missing enzyme needed to clean out harmful wastes in his son brain. Tracy would learn of a summit that was being held in Hamburg Germany in June 0f 2009. It was the 12th International Congress on Neuronal Ceroid Lipofuscinoses. Upon learning about this meeting, he booked a flight and traveled to be in attendance. Tracy would meet a researcher while at the summit in Germany. The story about Noah’s plight would have a profound impact on her and I am sure that his story would greatly affect her future research. Tracy would continue to travel as Jennifer’s parents helped with the children. Their family’s story would continue to spread among those who were researching treatments for their son’s disease. One point that this writer would like to make is that Tracy was not intimidated by the immensity of the challenge. He just acted on what he learned as he sought to solve the problem. More needed to be done and it was his goal to make sure that happened. There was no excuse for a lack of action. Noah had been diagnosed in March of 2009. It had been such a shock, just as it would be for any family. Jennifer stated that she honestly felt, at that time, that Noah would not succumb to the disease. She felt that science would advance enough in time for that to not happen.
The Balancing Act
As a team, Tracy and Jennifer were going to give their best in an effort to help that happen. Life became a balancing act. This between work life and Noah’s care. Keeping up on the advances of research and living family life. What about the twins and their needs? There were certainly all of the activities that go along with having twin daughters. Accomplishing everything, all at once, was a huge challenge. The following quote describes the couple’s approach to the challenges that they faced together, “We decided early on, we would create a balanced life for Emily and Laine as we knew Noah was pretty sick and at that point, no treatment in sight. Being able to keep Noah safe (he was still walking, but falling down often), was a challenge every minute of the day.” Jennifer was working at the time while a nanny helped with the children and she would often be called on to manage a fall or a seizure. As Noah’s Disease progressed, so would the challenges associated with caring for him. This did not stop them from taking action through Noah’s hope. This, both on Noah’s behalf and also in order to help others afflicted with CLN2 Batten disease. The non-profit foundation Noah’s Hope was founded in order to promote research and to help raise the money required to fund it. The number of initiatives funded, and actions taken over time would continue to grow as the VanHoutan’s own battle continued. This was a family that was working together. Not just for their own benefit but also for that of others.
Just like so many Batten children, Noah was granted a Make-A-Wish trip and he would meet his hero while he was there. Lightning McQueen was his guy and Noah was so happy to be at Disney to meet him. The family would stay at Give Kids the World Village. Jen’s parents, Mamo and Hoppa, as Noah named them before Batten disease took his ability to speak away, and her sister joined them while staying in a condo which was nearby. Jen and Tracy would also be joined by some friends for a time as well during the stay. These are memories that would never be forgotten. It needs to be noted that Noah’s sister Laine would fall in love with Cinderella and all things that are princess like on this trip. She was, herself, such a princess unaware. It would not be long after their return home that they were off again for the weekend to attend their first BDSRA family Batten conference. This would take place in St. Louis as they returned in July. Little Noah was still pretty functional during that first conference and had met at little girl who also had CLN2. She was from the great state of Texas and the two of them quickly became friends. They would play well together in kids care and this allowed Tracy and Jennifer to attend every meeting possible. This was a new experience and they would take in every bit of information that they could. BDSRA does a fantastic job with the siblings of Batten kids and they would provide care for Laine and Emily in the “Teddy Bear” club. This would allow the VanHoutans even more time to network with other families.
Tracy and Jennifer would need the relationships that they would begin to develop with the other families as there was much more to follow. Their hearts would soon be broken for a second time. Once again, their world would be turned upside down. They had quickly learned at the beginning that the disease was genetic and therefore, it was possible for one or both of Noah’s siblings to also have the disease. Laine and Emily, who were three years old at the time of Noah’s diagnosis, were watched closely for a while. Tracy felt strongly that the twins needed to be tested for Batten disease and so they were. The results of the testing provided a date that will never be forgotten. It would take weeks to get a conclusive result, but it was on August the 17th of 2009 that the family received the news. Laine also had the disease. Her twin, however, did not. Emily did not have CLN2 Batten. This happened exactly five months after Noah was diagnosed. Just like her big brother Noah, Laine had been normal and healthy in her early childhood development. She would reach all of her early milestones and her life seemed to be full of future potential. As had been the case with little Noah, the VanHoutans had considered all of the future events that should have taken place. Personal growth for both of their twin girls. Soccer and softball games, dance class and school clubs. Graduations at the various levels of education. College and weddings for each of them. It, however, was not be because Batten disease was fatal. How distressing this would be for any parent. The life that you had dreamed of having with your children was not to be. Jennifer described what life had been like for Laine and her twin sisters prior to Laine’s diagnosis. Again, this quote is taken from the Noah’s Hope website, “Our house rang with her giggles as she galloped down the hallway with her twin sister Emily. They were always a pair, whether coloring pictures for Mommy, snuggling during naps, or showing off their newest princess dresses.” All of a sudden, that which had been experienced was now in jeopardy of not continuing.
Little Laine was showing no symptoms whatsoever at the time that she and her sister Emily had been tested. The VanHoutans had hoped and prayed that the ugly disease that had invaded their home had not affected either one of their daughters. Their hopes were dashed with Laine’s diagnosis. Laine would begin having seizures just weeks after they received the word. She was then, three years and eight months old. Tracy and Jennifer’s hearts must have shattered with that first seizure. They had seen their son Noah digress and they knew what was coming with Laine. What about the twinship? What about Lainey, that adorable little half of this precious sisterhood that they had enjoyed watching? It is so difficult to make abrupt life changes when things like this take place. It is a cruel thing at times, but life doesn’t stop for Batten disease. It just heaps itself on top of existing anxiety. Jennifer described the effect that this news had on her after it was received, “This was devastating. I had a hard time functioning but had to because I had three children who needed me daily and I had a job I needed to do (with many deadlines since I worked in advertising).” Within the span of just a few months, the VanHoutan’s life had been turned upside down and it was never to be the same. Tracy responded by digging deeper into his research. Jennifer said that he was trying to identify as many researchers as possible. Somebody had to be on the cusp of making a breakthrough in science that would help his children! As the summer of 2009 went on, they continued to learn more about the disease and things became much harder with Laine’s diagnosis. Simply put, Jennifer explained it like this, “I was at a loss and had a hard time.” Just like many of the resilient little men that would come before and after Noah, he was “blissfully unaware” of what was going on around him. Jennifer stated in Noah’s Hope that it was apparent, Noah was frustrated at times by his loss of control. This, even though he was never really conscious of his decline.
Jennifer shared in Noah’s Hope the fact that unlike Noah, Laine would be completely aware of what was taking place in her body. This because she knew what had taken place with Noah. She recalled that Laine had crawled into their bed and with innocent eyes looking at her parents, said the following, “I can’t see! I can’t see! Like Noah?” On the website, the question is then asks, “What do you say at a moment like this? What do you say when your little girl can see her future in her sick brother’s deteriorating body, and you can’t do anything to stop it?” That is what would take place, and this is what was faced by this family. What about Emily? She was also aware of what was taking place with her twin sister. It was Emily that had found Laine when she was having her first seizure. This happened while they were napping together one afternoon. How scary! Can any of us understand how she must have felt at the time? This, with Emily being so close to her twin sister. So many questions came to Jennifer’s mind. How could she help her children? How could they survive all of this as a family? The thing is that this same type of thing has been experienced by other families. This, being those who have more than one child that has been diagnosed with Batten disease. Even with one, it is at times, too much to bear. For Noah and now Laine, there was no treatment yet available. How helpless this would make any parent feel! Jennifer would tell me a couple of things that for the rest of us, would seem like an understatement. They are included here in what she had to say, “It was a tough year - but I chose to keep moving forward and do the best we could with where we were. We had a wonderful school district who supported us and our friends, family and parents supported us as well. It was busy in our home for years.”
Jennifer was already aware of what sweet Laine was facing as she was diagnosed in August of 2009. As a result, she chose to apply for a Make-A-Wish trip for Laine before she regressed too far to enjoy the trip. Of course, she was excepted. Jennifer had wanted Laine to enjoy a visit with Cinderella. Remember, she loved princesses and Jennifer’s little princess would soon meet another! This time, things were kept simple with the help of Jennifer’s parents. They were good enough to watch Noah while she and Tracy went on the trip to Disney with Laine and Emily. Jennifer would be more than comfortable with this in part because her mom was a very experienced registered nurse. Doing things this way would allow them to focus more attention on Laine. Lainey would spend time with Cinderella and Prince Charming while at Disney and you just know that it was a very special time for everyone. Memories that are impossible to forget are made on these Make-A-Wish trips. This is, of course, in addition to joy that it brings to a most deserving child.
Noah would be enrolled in a program for kids with special needs in the fall. Laine and Emily would attend preschool together as Laine was still able to walk. This, however, would be the only year that they would do so. The VanHoutans would be advised that Laine receive full time support while continuing in preschool. When four-year-old preschool began, Emily on the other hand, would be enrolled in a Montessori school as she achieved completion of the program. It was a sad reality that Batten disease was robbing Laine of the potential that she shared with Emily. The twinship would begin to be deeply affected as the two girls were separated for the first time. As one would expect, time would continue on and so would the progression of Batten disease in Noah and also Laine. As Jennifer shared the details of their journey with me, she shared something that was difficult for her to write. It had to do with her twin daughters, and this is what she said in written word, “The hardest part of Batten is that Emily and Laine are twins. Emily had to watch her once playful mate lose her abilities. Emily was such a good toddler and easy-going-spirit for so much of Noah's diagnosis journey. However, she had a difficult time at age five because that is when she began to notice her twin sister not keeping up with her in so many ways.” Once walking and talking together constantly, Laine was changing, and Emily just couldn’t understand. She was only five years old. Jennifer continued on and briefly described the struggle with Laine’s twin sister and life in general, “Emily acted out and that was a struggle because I knew why and couldn't make it better. I struggled to get her to Montessori almost daily and was stressed to race home to be on a conference call or just even get my work done while the kids were at school.”
Noah was a typical little boy. This, up to the time, and even after he started having seizures. He was fun loving, and he loved his mom and dad. He ran and he played. His favorite things were those that were used in transportation. Trains, cars, trucks, and especially, his toy dump truck. He loved baseball and the Chicago Cubs were his team. He loved playing the sport in his own little way and he loved it when people took the time to play it with him. He came from good stock, as they like to say. Both parents being college educated and intelligent. Noah showed everyone, early on, that he had great potential and people felt that he had a very bright future. Sister Laine was cut from the same mold when it came to being intelligent. She would grow to love everything princess like and she was, herself, a darling little princess. She so impressed the people who knew her best. The most impressive thing that her mom had observed is Laine teaching herself to walk. Jennifer said that her daughter never cruised before walking. This is what she said concerning Laine as she first took flight, “She saw Emily walking one day and was determined to walk. So, Laine crawled into the middle of the room and kept trying to stand up and launch herself into a walk. She did it for about an hour and that is all it took! She was walking from then on.” Jennifer also talked about Laine’s ability to tell a story using the pictures that she viewed while looking at books. Hoppa taught her this! Jennifer will always remember the day that she found Laine in a ballet first position. She learned this from a book about ballet. She had interpreted the book and she was only two years old at the time! She was yet another, brilliant little mind that was soaking up information. People could see the potential that was there from a very early age.
The Juggling Act
Things can change in such a very short time. Especially when we are talking about the journey that is Batten disease. In Noah’s Hope, Jennifer referred to life in their home as being a “juggling act”. It is a similar experience for any parent or caregiver who devotes their time to one of these little warriors. What about when there is more than one Batten child to care for? The giving of medications that are constantly changing as the disease progresses. Emergency room visits and sleepless nights. In home procedures to keep oxygen levels up or to just help your child to be able to breath. By age six, Noah was confined to a wheelchair and was starting to be tube fed. The cruel reality is that his sister Laine would one day follow this pattern because the treatment that the VanHoutans sought after would not yet be available. These kids are the most resilient as they continue to find joy in living, even as their health is declining. One thing that I have learned is that it is completely devastating to a parent when they no longer see their child smiling. They just are no longer able to do so. Jennifer said that it was in 2011 that it seemed that Noah was able to communicate “Yes” and “No” by blinking his eyes. That, however, would not last long as his body continue to decline. All of this was just devastating to see happening. It would make any parent feel helpless. Handsome Noah would battle so hard even as his spirit “continued to inspire” those who loved him. This, even as the disease progressed in his body. To watch the ruthless nature of Batten disease and the way that it affected Noah’s life was so challenging. Yet the VanHoutans would remain determined in their desire to make a difference while also helping their son through his difficult journey.
And then there were these adorable twin sisters, Laine and Emily. Lainey would soon be able to walk only by the aid of a walker and It was becoming a struggle to feed her. The seizures would become hard to control and this was difficult to watch. Each seizure would be another reminder concerning the severity of her condition. Laine would remain aware of her own decline for some time after her diagnosis and that would break the hearts of those who loved her. You could only imagine the feelings of frustration as her decline continued. Noah’s Hope describes a time that will never be forgotten. This, as the impact of Batten disease would begin to affect the relationship between these two sisters. From Noah’s Hope, “It was a terrible day for Laine when she realized that she could no longer run with Emily. They did manage to walk down the aisle at a friend’s wedding in June of 2011—our beautiful twin flower girls. Sadly, that was one of the last walks the girls ever took together.” I don’t believe that twin sisters could ever be separated but the relationship between Laine and Emily would become more distant as the disease progressed in Laine. That part especially, saddens me. The amazing thing, although not surprising, is that Laine’s relationship with Noah deepened as her health continued to decline. Laine would “light up” around Noah and her smile brought a smile to other people’s faces as they looked on. Daily, there were challenges and reasons to be heartbroken but there were also sweet times that would bring an abundance of things to be remembered. Jennifer talked about the mixture of feelings as she shared the following from the website, “We cherished each smile. And while we mourned for the future that could have been, we embraced each day that we had, cherishing our little blue-eyed girl who used to dance.”
The VanHoutans are people of action. It had to be discouraging at times to watch as two of their three children’s health declined. And yet, they involved themselves in the lives of others and the cause of making a difference in the lives of those people. They were as active in the Batten community as any and would seek to make a difference on the world level. Because of this, Tracy would be selected to serve on the board for BDSRA (Batten Disease Support and Research Association). He would serve there from 2010 to 2017. Alongside any good man is a good woman and that person would be Jennifer. Balancing work, family, and the care of their little warriors was a challenge but that would not get in the way of their work in the Batten community (This writer endeavored to write about the VanHoutans after hearing their names mentioned by several different people). As has been mentioned previously, Tracy was always actively involved in knowing about research that has taken place for the treatment and the cure of CLN2 Batten disease. He would be keenly interested in things that could potentially help his children but also things that could help others. Through their own plight, the VanHoutans had discovered a purpose that they never knew existed as they were involved in the battle that is Batten disease. Tracy and Jennifer were a small part of the rare disease community, but they were trying to make a big difference. I think that they were well equipped for this and in fact, the VanHoutans would make a big difference. As a couple, they would be aware of potential treatments for Batten disease and would also be in discussion with those that were involved in bringing them about. One of the potential therapies was something known as Enzyme Replacement Therapy. This was something that could have helped their children had it been developed and approved sooner. The development of this technology had gained the interest of a biotech firm that had expertise in enzyme-based therapies. The company had invested significant resources to develop this treatment but was facing regulatory issues and delays. In fact, the delays grew to the point that the clinical trial opened and enrolled patients in Europe prior to the clinical trial opening in the United States.
Again, Tracy would not be intimidated by the immensity of the task. He committed to working to help speed up the process. The list of initiatives for Noah’s Hope states that Tracy would appear before a committee of members for the Food and Drug Administration in 2011. In that appearance, he discussed the challenges that were faced in the rare disease community as a result of the lack of speed at which new treatments were approved. At that meeting, Tracy would go on to submit a list of proposed changes to members of the FDA. It would not stop there. Over the course of time, Tracy would make several trips to Washington, DC. and worked with other advocates to recruit members of the House and Senate to be a part of the Rare Disease Congressional Caucus. This is not minor league stuff! Noah’s Hope would become a key supporter of legislation to help give rare disease patients better access to new therapies through accelerated approval of such treatments.
Making a Difference
In September of 2013, Tracy was invited to give testimony before the Rare Disease Congressional Caucus. It was during that appearance that Tracy spoke about the disease that affected his children and his testimony was very moving to say the least. He would then go on to talk about the formation of the non-profit foundation known as Noah’s Hope. He explained how the foundation had co-funded research at Rutgers University. The goal had been to develop enzyme replacement therapy for CLN2 Batten disease. Tracy then spoke about the clinical trial opening up enrollment of patients in Europe before the clinical trial was approved to move forward in the United States. Tracy emphasized the real life consequences of these delays and that regulatory delays were slowing access for patients. This type of thing was not new to those seeking to make a difference in the lives of those who had a rare disease.
Tracy’s testimony, which was based on knowledge of the facts, would be an eye opener for those who were in attendance. Therapies that were developed by American companies and funded by U.S. dollars were being exported to be tested in trials overseas because of regulatory delays. This type of thing was affecting the VanHoutan family, but it was also affecting many others. Changes needed to be made and again, Tracy would offer his opinion as to what those changes should be. He and Jennifer, through Noah’s Hope, would make a difference and as a result, they would become recognized as leaders within the rare disease community at large. It would not be practical to mention everything that was done through Noah’s Hope in helping to bring Enzyme Replacement therapy to affected children in the United States. It just needs to be known that the effort put forth by the VanHoutans is recognized by BDSRA, the FDA, BioMarin (the biotech firm), and also different rare disease advocacy groups. The VanHoutans made a difference that was impactful. That is what happens when impassioned people who are qualified and equipped take action. Tracy and Jennifer were maybe a little more than ordinary at the beginning, but they would become recognized by most as taking action that would be considered extraordinary. In the beginning and throughout, the goal would be to help their own children along with the others facing Batten disease. As time moved on, it would become more apparent that time was not in Noah and Laine’s favor. However, Noah and Lainey’s life would not be lived in vain. Not only have both of their lives impacted the members of their family but, through their parent’s actions, their lives have impacted countless others. Noah and Laine are beautiful for all of eternity.
What was dreamed of for baby Noah as Tracy and Jennifer began their family would not come to pass. Unaware as he may have been, Noah would build a legacy that will be felt for a lifetime. This quote from Noah’s Hope describes perfectly the days that made up the majority of Noah’s life. It would be wrong for me to use it for reference only. Here is what is written in full, “The days are long, but the years are short. Never has this seemed more true than for our son Noah. While we focused on loving and caring for our children, we spent most of Noah’s short life researching, fundraising, collaborating, and searching for a cure. And even as we faced the harsh reality that a cure would not come soon enough for Noah, we plunged ahead with the many changes that life demanded.” Noah gained his wings in March of 2016. He was just shy of his twelfth Birthday and it had been seven years since he had been diagnosed. The first FDA approved therapy for any form of Batten disease was approved in the United States on April the 27th of 2017. It’s my feeling that its approval will always be a part of Noah’s legacy. This, Because of the action taken through Noah’s Hope. Just like a lot of little boys from the greater Chicago area, Noah loved baseball and his Cubbies were the bestest. Noah was loved by many during his short time on this planet. Noah’s life would provide many precious memories that are full of sweet details and this provided just a few of them. One detail that would be considered sweet to any Cubs fan would be that which is stated in a fact that Jennifer shared with me “We often tossed the ball with him (Noah) in our yard. We dreamed he would be a southpaw for the Chicago Cubs. The year Noah passed; the Cubs won the World Series!!! It had been 108 years without them even being in the WS! I think that there were many angels in the outfield, including Noah.” Noah’s life will always have been of the greatest importance.
Laine, or Lainey Lou, as she was called affectionately, was an absolute earth angel and also a warrior of a princess. Just like her big brother Noah, she would battle Batten disease as she gave it everything that she had. She was so loved by everyone that knew her and she was beautiful as could be. Her brother had passed into eternity prior to the approval of enzyme replacement therapy in the United States. Laine would join her brother after the approval had come but she had digressed to the point that she would no longer qualify for the trial. Lainey gained her wings in March of 2018. She had just celebrated her twelfth birthday. Just like her big brother, she had been surrounded by her family and friends who adored her. She was free and finally at peace. Also, like Noah, her battle had not been fought in vain. This because both of these children had impacted the mission of Noah’s Hope in a profound way. Not only that but both of them were so loved and still are. Their lives both provided memories that are full of sweet details that existed amid the heartbrokenness. The lives of kids that battle Batten disease are priceless beyond what words can tell. I’ve said it before that these kid’s affect people like known other. Even though their lives are cut short, they mold people into something that they may have otherwise never been had they not come along. Tell me that this isn’t true! One of the cute things about Noah is that he was responsible for giving special names to each of his grandparents.
An Extraordinary Family
Of course, there were Jennifer’s parents, who I have already mentioned. Noah had named them Mamo and Hoppa and they were all very close. Not only close in proximity but also with the bond that they shared. I want to make mention of the fact that Noah had given special names to his other grandparents. Madilyn is Tracy’s mom, but is known really as Mandy. However, to Noah, she was not Mandy. Noah had given her the named Beeba. Beeba lives 300 miles away from the VanHoutans and resides in the state of Iowa. The family would travel to see Grandma Mandy during Memorial Day weekend and over Thanksgiving each year until the demands of Batten disease got in the way. That would not stop Beeba from seeing her grandkids as she then began to travel in the other direction a few times each year. She would stay involved in the lives of Noah and Laine as much as possible, even attending the families first few Batten conferences together. In doing so, she would build relationships with another very special group of people. Tracy’s dad and step-mom who were known as “Grandpa Jerry and Grandma Susan” to Noah and Laine live in Michigan. They would visit the VanHoutans a few times a year. For many years all five grandparents would travel to attend the Batten conference. Just like Mamo and Beeba, Grandma Susan dearly loves her two Batten angels and their lives have all been deeply affected by their little journeys. Speaking of the way that the lives of Noah and Laine have affected the people in their family, what about their two sisters, Emily and Colette? Did I forget to mention Colette? No, I saved that opportunity for right now but let's talk about Emily first.
Jennifer would state that Emily has seen more in her thirteen years of life than most adults. That is, in fact, the truth and you just know that Emily’s experience with her siblings would bring with it a level of maturity and insight not possessed by most people her age. I get the feeling from talking to Jennifer that Emily guards her emotions and her conversation concerning her experience with Noah and Laine. She is, however, a very talented young lady who expresses herself in her writing and with writing songs. Her singing voice is very pretty, and her talent extends to her ability to sing songs well. Sisters stay sisters for life and there are none closer than twin sisters. They start out together in the womb and they share all the different stages of growth. They are connected in a way that can only be experience by twins. I believe that Emily will take Laine, and the experience of having her as a sister, with her for the rest of her days. Laine will always be a part of who Emily is as a person and others will benefit as a result. Emily’s connection with Noah and Laine extends to other siblings within the Batten community. The best example is a girl named Sophia who had met Laine and Emily very early on at a Batten conference. She was born just one day after the twins and has developed a deep friendship over the years with Emily. These two young ladies understand each other’s feelings like none other can. The Batten community is amazing and very supportive of one another. Emily and Sophia are just another example of that.
Emily is a blessing to her parents and so is Colette. Like her sister Emily, Colette does not have Batten disease. She was only fourteen months old when her big brother would join his angel counterparts. Her memory of Laine would be a little bit greater because she was three years old when Lainey gained her wings. Even with her being at such a young age, Colette knew how to assist in the care of Noah and Laine. At the very least, she gave it her best in her own sweet little way. Jennifer stated the following concerning the effect that the entire experience will have on Colette, “I believe this is imprinted on her soul and she will grow up with a caring nature, even though she may not remember Noah and Laine physically.” She will always be aware of her big brother and Emily’s twin as there are photos of them all over the house. There is no doubt that being a part of a family with two Batten angels will have a great effect on Colette. I wonder if her life helps to fill a void left by the departure of her siblings? Perhaps that is not possible. Noah and Laine, however, are still present, even if now in spirit and in the hearts of those who love them!
Things aren’t as they would have been had Batten disease not invaded the home of the VanHoutans. Things are different but actions have been taken for the good of others. Tracy and Jennifer have high standards. This along with their training and education would have brought them continued success, both in their careers and in family life. The Batten experience has added some things that they never would have expected. Certainly, they would have rather had Noah and Laine healthy and whole but they have taken the most difficult of circumstances and have been motivated to influence the lives of others. They are both people that have made a difference in the battle against Batten disease and their involvement still continues through Noah’s Hope. They now have a big extended family in the Batten community and in this, they have received comfort. Instead of friendships, they have what Jennifer likes to refer to as “familyships”. They receive support from people around the world as they return that support in kind. Noah’s Hope has continued to support research over the years through a number of initiatives that have aided in that support through funding. Both Tracy and Jennifer continue to be a voice for those who want to bring about change. They are tremendous advocates that do things behind the scenes for those associated with this cause. Raising funds and supporting the research community is their emphasis along with the support that they offer to those who make up the Batten community.
One of these “familyships” is with the Kennicott family who also live in Illinois. Their daughter, Bridget, was about 6 months younger than Noah and a year older than Laine. Bridget was diagnosed with CLN2 Batten disease in 2009 too – and so these two families quickly found each other and shared ideas and resources. The Kennicotts told the VanHoutans about a pediatric palliative/hospice group. This was game-changing for the VanHoutans in their care for Noah & Laine. Because the Kennicotts set up “Hope 4 Bridget” in 2009, and their mission of research and education was the same as “Noah’s Hope”, the VanHoutans and Kennicotts created a joint 501©(3) a few years into their Batten journey and created “Noah’s Hope-Hope 4 Bridget”. Even with three angels, these families remain close. Another familyships that was developed with the VanHoutans happened between them and the Diaz family. Alex and Barbara Diaz were a young couple who desired to have a family together. Barbara had brought to the marriage a beautiful daughter but she and Alex had a desire to increase the size of their family. This would be accomplished through the lives of the new additions, Mia and Kaleb. Both of these children would be beautiful just as their big sister Jaylen was. This being true, each of these children would bring with them a real challenge for Alex and Barbara. Both Mia and Kaleb would one day be diagnosed with CLN2 Batten disease. This, just as Noah and Laine had been at an earlier date. The difference was that both Mia and Kaleb would be able to become recipients of enzyme replacement therapy. You see, the actions taken by the VanHoutans would, in large part, help the Diaz family in a big way. Mia and Kaleb benefited greatly because of this. It was at the time that I did the story of the Diaz family that Barbara Diaz had made mention of the VanHoutans. The story was titled “Warriors Unaware” and it has become the standard for all other stories that have come after it. In that story, Barbara would talk about the impact that the VanHoutans would have on them as a family.
Here is what was said by Barbara in Warriors Unaware, “Just days after receiving the Batten diagnosis, through a web of other special needs family Facebook groups, I found a family who also had two kiddos with Batten. I was able to get on the phone with the VanHoutans and talk to them for a while. They had so much helpful information about therapies, vitamins and supplements but most importantly they told me about a clinical trial. There were two at the time, one was a very invasive gene transfer in New York City and the other was an enzyme replacement therapy overseas. (please note, current gene therapies today have a different delivery method). At the time, New York’s gene replacement therapy was the only U.S. clinical trial available, the clinical trial for enzyme replacement therapy had just begun in Germany. On this call, the VanHoutans told me that they would take the enzyme replacement route if they still could.” Barbara would go on to say the following, “My mind was all over the place while still trying to process everything and grieve but what they told me, stuck with me and I immediately sent my first email to Biomarin.”
The VanHoutans had brought a great deal of comfort to Barbara as they talked with her on that first phone call. They had experience and knowledge that was so beneficial at that time. They knew what she was feeling. Tracy and Jennifer were the people that Barbara needed on the other end of the phone and that experience will never be forgotten by her. I am certain that this experience has been shared by many others who would make contact with the VanHoutans at the beginning of the Batten journey. It would be about seven months later that the VanHoutans would vacation in Florida, just a couple of hours away from where the Diaz family lived. Alex, Barbara, and family would make the trip to meet this amazing couple and it would be an experience that they would never forget. Just as they had on the phone, the VanHoutans would give great comfort to the Diaz family because of the shared experience as a Batten family. This was something that Alex and Barbara needed greatly at that time. Here is some of what Barbara had to say about that meeting with the VanHoutans and it closes with what Tracy and Jennifer mean to the Diaz family, “They were the first Batten family we met and just like having them on the phone, it was just as comforting. Noah stayed back home for this trip but we were able to meet Emily and Laine. We had one of the most important conversations we’ve ever had over dinner and swam until the sun went down. The VanHoutans are so dear and special to our family. We are so grateful for them and their hard work. Without them I don't think we would be where we are now. We love the VanHoutans.” I could go on and find more examples concerning the contributions of the VanHoutan family, however, I think that I have made my point by now. These are special people. The lives of Noah and Laine have impacted the lives of many others through the actions taken by their parents. Not only this but Noah and Laine will be beautiful for all of eternity. They will live on through the legacy that has been built and will continue to be present in spirit.
I had been keeping it in mind to find a title for this story throughout the time I was writing it, however, it had remained a bit of a struggle. Jennifer would wind up helping with this and as usual, her help was just what I needed. Do you know what a Juxtaposition is? I had an idea but I looked it up to make sure that I knew for certain. Here is how the word is defined in Wikipedia,
“Juxtaposition is an act or instance of placing two elements close together or side by side. This is often done in order to compare/contrast the two, to show similarities or differences, etc.”
A juxtaposition is what I had in mind when I had once used the term “A Beautiful Tragedy” in the introduction to another story. I was trying to share some observations of mine. This, by stating that the journey that is Batten disease is a tragic but also that within it are details that are beautiful. It is tragic when any child is taken from their parents because of a disease like Batten. Make no mistake, it truly is awful. It is also true though, many of the details that make up the stories of these young people’s lives are beautiful. Tell me that this is not true! Jennifer had shared with me something that was said by Tracy concerning young Noah’s funeral.
Tracy had told Jennifer that the event was “awfully beautiful”. I believe that the implication was that it was awful to have to say goodbye to Noah, but the way that his funeral was done was beautiful. It is awful in so many ways to take the journey that is Batten disease. Along the way, so many things that are beautiful in regards to these two children were seen. Many beautiful things have come out of something that is awful. So many of the memories that I have been allowed to recount are beautiful. They stand side by side with the awfulness that is this disease. The journey that was taken by Noah and Laine was awful to observe. Standing out among that awfulness are the sweet details that make up both of their lives. That is where the title of this story comes from and it was given to me by someone who speaks with authority. Noah and Lainey’s lives will always be beautiful. Awfully beautiful!
Blogger and Advocate
Much of the material that was brought together for this article exists on the Noah's Hope website. Please feel free to take a look:
I would also love for you to watch this video and others that exist on the Tracy VanHoutan YouTube channel:
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