Searching for Answers
“He hit all of his milestones and I think once it came time for him to start walking, I started noticing that like his knees started hyperextending backward and he just seemed to like when he was cruising along furniture and stuff he just seemed really off balance.”
For Jessica, the journey to a diagnosis was a long and frustrating road that began when Seth was just a toddler. After visiting multiple specialists at clinics like Cincinnati Children’s and the Children’s Hospital of Philadelphia, genetic testing finally revealed that Seth has H-ABC Leukodystrophy. This is an incredibly rare genetic terminal brain disease that affects the myelin, which is the protective sheath covering the nerves. Because his myelin is not growing properly, the signals from his brain often get lost before they can tell his muscles what to do. It is a diagnosis that is estimated to affect only one in 40 million people.
A Patriot With Big Dreams
“He loves everything that other kids his age love. He loves his four-wheeler… he loves going to the beach… he loves fishing pretty much everything that any other kid would like, it is just a lot harder for him to do.”
Despite using a power chair and a gate trainer to get around, 14 year old Seth is just a normal teenager who loves being outdoors. He is a student at Independence High School and spends his time playing special needs te-ball and sled hockey. Navigating life in a wheelchair in West Virginia can be a major challenge because many buildings and stores are still not fully accessible. His mother was so inspired by his journey that she even went back to school to become a physical therapist to help him and others like him. Through it all, Seth remains a social and determined kid who loves racing his friends down the road in his power chair.
The Hope in Chicago
“One little girl in particular she had really poor balance and was kind of struggling when she would walk in her walker or gate trainer and now she’s pretty much running in it… we got to get Seth up there.”
The biggest hurdle right now is getting Seth to Rush Hospital in Chicago for a promising new medical trial. While there is currently no known cure, this treatment has already helped other children with the same condition start walking on their own. The cost for the two year trial is roughly $100,000, and unfortunately, insurance refuses to cover it since it is out of state. Jessica and her best friend Britney are working tirelessly on fundraisers and a GoFundMe to make this happen. They are taking things one day at a time, keeping their faith strong that this treatment will give Seth the future he deserves.
Want to see the heart to heart conversation with Jessica and Britney? You can watch the full video to hear more about Seth’s incredible spirit and how you can help him get to Chicago.
