Colton is an energetic, curious seven‑year‑old who finds joy in the simplest things — marbles, a game of tag, a good tickle fight, or an afternoon filled with crafts. He is also Cooper’s younger brother, and like his brother, he is bravely fighting Dravet Syndrome.
Because Whitney learned during pregnancy that she carried the SCN1A mutation, Colton was tested for Dravet Syndrome at birth. For eight long weeks, his parents waited for the call they feared. When the phone finally rang, their world shifted again — Colton also carried the same gene variant that had changed Cooper’s life.
Just like his brother, Colton’s first seizure struck at seven months old and lasted 35 minutes. But from that point on, his journey followed a path all its own.
Soon after his first seizure, Colton began experiencing myoclonic jerks along with status tonic‑clonic seizures. Then, at just 11 months old, Colton suffered a 75‑minute convulsive seizure followed by a 25‑minute cardiac arrest. Nate and Whitney were told he might not survive.
Miraculously, Colton survived the seizure and after a month in the hospital, gained back all the skills he lost, including his eyesight. Today he still has residual speech impairment due to the trauma to his brain.
Ater 2 years of primarily tonic-clonic seizures, Colton began experiencing hemi-clonic seizures which he still battles with today. These typically last over 30 minutes and always require rescue medication. Seizure control remains elusive and unpredictable.
Still, Colton is doing very well cognitively and is thriving in a typical school setting. His mom and dad thank their blessings every day for the additional time with him they have been gifted and try their best to allow him to live while ensuring he is safe.
Whitney and Nate have faced heartbreaking realities: their boys may live at home well into adulthood. They may never celebrate passing a driver’s test. They may never watch their sons hold children of their own. These truths are heavy, and they live with them every day.
But they refuse to stop hoping.
They refuse to stop fighting.
They refuse to accept that this — the seizures, the fear, the losses — is the best future available to their boys.
They believe in miracles. And, with your support, they believe in the possibility of a cure.
