Kolson’s Journey: A True SCN8A Superhero
Born: February 2017
Kolson’s journey with SCN8A began at just 1 month old, though his family believes his seizures may have started at birth. By the time he was 5 months old, Kolson had received his SCN8A diagnosis—a moment that set his family on a challenging yet hopeful path.
At his worst, Kolson experienced between 60 to 150 seizures a day. Many of these required oxygen and rescue medications, leading to countless hospital stays and sleepless nights for his devoted family. Despite trying numerous medications, none seemed to offer relief.
That all changed two years ago when Kolson’s family found a medication that worked well for him. Since starting this treatment, Kolson has experienced just two seizures, and his progress has been nothing short of extraordinary.
Defying the Odds
Doctors once told Kolson’s parents he wouldn’t make it past the age of 2. Today, at 7 years old, Kolson is thriving, reaching milestones his family was told might never happen:
- Crawling with Determination: Kolson doesn’t walk or stand unassisted yet, but his crawling skills are unmatched. With unwavering effort, he’s even begun walking while holding his family’s hands.
- Saying “Mama”: Kolson doesn’t speak, but his joyful screams and the sound of “Mama” bring endless pride and joy to his family.
- Celebrating Life: This year, Kolson celebrated his 7th birthday—a milestone that means the world to his parents.
Kolson’s story is a testament to resilience, love, and the power of never giving up.
