Will’s Updated Story – September 18, 2026
16 years old
Colorado
Warrior #21
(See Will’s Original Story below)
Will is now 16 years old. He was diagnosed with SYNGAP1 at age 6, after years of developmental delays, seizures, and countless therapies. He remains nonverbal, but he is very vocal and has so much he wants to communicate. He uses a speech-generating device and is very good at navigating it, although communication can still be incredibly frustrating for him.
One of our biggest battles over much of the past six years has been finding an appropriate school for Will. During the COVID-19 pandemic, the school he had been attending closed, and he was sent back to our local school district. His placement was okay at first, but the specialized program he attended was discontinued. He was moved into a large middle school and then a large high school, neither of which was an appropriate environment for him. We eventually had to obtain legal counsel to secure a suitable school placement. It took years of fighting and advocating to get him where he is today.
Will now attends an ABA-based school in Boulder, Colorado, which has been a blessing. He loves his school and seems happy to go each day. At home he receives therapy every weekday, where our main focus is on helping him become more independent wherever possible. He currently requires support with nearly every aspect of daily life.
His favorite therapy is music therapy. It brings me so much joy to hear him try to sing along and watch him play instruments with interest and enthusiasm. At the same time, he is working on skills like sequencing, crossing the midline, and doing multiple things at once. Every session I’m so impressed with him and his music therapist.
Many of the things Will loved when he was younger are still his favorite things today. He loves basketball, climbing stairs, watching ceiling fans, opening and closing doors, and pointing out traffic cones everywhere he goes. He loves swimming and sitting in the hot tub at our local rec center, jumping and playing dodgeball at the trampoline park, and visiting our local children’s train park. He loves to have a picnic and watch the train go around and around.
Will also loves spending time in the Colorado mountains. One of his favorite places is Estes Park, where he goes up and down the tall rainbow slide over and over again. Afterward, he will sit beside the river and throw rocks into the water. It’s a great sensory experience for him.
Will also loves throwing rocks at his grandma’s house, playing with the wind chimes, opening cabinets, running up and down the grassy hill, and looking at and kissing pieces of watermelon, although he will never eat them. He adores grandma’s toy Aussies, Bear and Ziggy. He also loves spending time at Jax Outdoor Gear, where opens and closes the swinging doors as long as they let him.
Will loves his family and his therapists deeply. His best friend of 11 years is Hannah, who has been his speech therapist, respite provider, and para over the years. We love Hannah.
Will’s atonic seizures remain under control, but he is still plagued by atypical absence seizures and can experience as many as 25 each day. In 2023, his VNS was replaced with a newer device that has a longer battery life. He continues to take seizure medications as well as medications to help with his behavior.
At over 6 feet tall and 230 pounds, Will’s size presents new challenges. He is extremely strong but also uncoordinated, and his body can be difficult for him to maneuver. Staying active is important, but it is not easy. He also has a very restricted diet, which has gotten worse over the years.
Will continues to struggle with aggression, particularly when he is denied access to something he wants or when he is experiencing gastrointestinal pain, which has been a problem his whole life. He also elopes and has no understanding of danger, which is one of our greatest worries. His aggression is a part of his disability, but it is not who he is.
As Will has grown, other people’s reactions to him have changed. Little children are sometimes frightened by his size, but in Will’s mind, he is the same size as they are. He still wants to run, play, climb, and go down the slide just like he always has. He loves the playground, and it breaks my heart to think that there will come a time when he is no longer welcome there. I wish there were more places designed for teenagers and adults like Will, who still find joy in the activities they loved as children.
My greatest fear, like that of so many parents in my position, is what will happen to Will when I can no longer care for him. We are incredibly attached to one another. I know every expression, behavior, sound, and subtle sign that tells me what he needs, but that understanding has been built over the entire 16 years of his life.
I hope that whoever cares for him in the future will understand how deeply loved and valued he is as a person. I hope they will see beyond his size, his aggression, and the things he cannot do independently. Will brings so much joy to the people around him. He is loving, enthusiastic, funny, and always himself.
Will is also the reason I became involved with CURE SYNGAP1, where I work as Operations Manager. Being his mom has connected me to a community of families working toward better treatments and a better future for people with SYNGAP1. My hope is that Will will always have the support he needs, the freedom to enjoy the things he loves, and people in his life who recognize how special he is.
Will’s Original Story – May 22, 2019
9 years old
Colorado
Warrior #21
Will is a 9-year-old boy who was diagnosed with Syngap1 when he was 6 years old. It was noticed he wasn’t developing normally around age 12 months. He had no spoken words and was not attempting to walk at all; was barely crawling. Will remains nonverbal. He is very vocal, however, and I believe he has a lot he would like to say. Will uses a speech generating device and goes to an amazing school where he is encouraged to communicate all day long with it.
Will has been in various therapies since he was 18 months old including speech, occupational, physical, and behavior therapies. He has a seizure disorder which includes atypical absence and atonic seizures. He had many drops as a toddler from the atonic seizures and has had stitches and staples in his head, loss of nerve function resulting in a gray front tooth which thankfully came in white as a permanent tooth, as well as a fractured clavicle. He eventually got a protective helmet which helped with head injuries.
Will has tried many seizure meds and has never been fully controlled. He had a vagus nerve stimulator (VNS) implanted when he was 4. After that it felt like we experienced a miracle. His drop seizures seemed to have been cured. He still takes two heavy seizure meds as well and we see occasional breakthrough absence seizures. Will has aggressive behaviors when denied access to what he wants. He also doesn’t understand danger and is a very fast runner who doesn’t normally listen when told to stop. Will is an extremely-active child and rarely will you see him not moving. He loves playing basketball, climbing stairs, watching ceiling fans, and opening and closing doors. He is also very affectionate and loves the people in his life. He has a fun-loving personality and you can’t help but enjoy his genuine happiness.
