Cooper is a vibrant, bright‑eyed 8‑year‑old boy whose joy is contagious. He loves fire drills, worries deeply about others, and exudes the kind of compassion most adults spend a lifetime trying to learn. Though he is cognitively behind his second‑grade peers, his heart is impossibly big — and anyone who meets him feels it instantly. If Cooper could survive on butter and cheese alone, he absolutely would!
Still, Cooper has lived a childhood no parent desires.
Cooper’s first seizure struck when he was 7 months old. It lasted 35 horrifying minutes and ended with days in the hospital. Before that moment, he was a typical, joyful baby meeting milestones and melting hearts. But after that day, everything changed.
Status tonic‑clonic seizures became a regular part of his life. The trauma teams at the hospital learned the Batt family’s names, and the Batts learned theirs. Paramedics greeted them not with questions, but with recognition.
Cooper was first diagnosed with epilepsy — but Whitney knew something didn’t fit. These weren’t typical seizures. They were long, unstoppable and dangerous. During a desperate Google search — “status seizure, baths, heat, intubation” — she found an article on the NORD website describing Dravet Syndrome. Upon reading, she and her husband knew this was what they were dealing with.
That search may have saved Cooper’s life.
Within weeks, they connected with an Atlanta neurologist listed on the Dravet Syndrome Foundation website. Today, the Batts are convinced that without that article, that foundation, and that doctor, Cooper would be far worse off.
Genetic testing confirmed the diagnosis: Dravet Syndrome, at just 11 months old. At the same time, Whitney was seven months pregnant with their second child. When their genetic counselor urged them to get tested themselves, they learned Whitney also carried the mutation. Their second baby would have a 50% chance of inheriting it.
(You can read more about Colton on this site.)
Cooper’s childhood has been HARD to say the least. He has been intubated 3 times, had hundreds of seizures, dealt toxic levels of medications, horrible side effects and injuries. He has missed parties, celebrations, school and holidays. Still, he can light up a room with his presence and continues to fight through every seizure and recovery.
He is currently in a main-stream classroom with a one-on-one aid, special ed teacher for all his subjects and attends over 6 therapy sessions a week to help with speech and OT. He continues to have weekly tonic-clonic seizures and has tried over 9 different medications to help control their severity and frequency.
The Batt family hopes to one day have a cure for Cooper, his brother, and all the other Dravet children. Every day with their boys is a gift they will never take for granted.
