Cooper is known by all his friends, teachers, family and therapists for his infinite kindness and concern for others. Although cognitively behind his first-grade peers, his love and compassion for those around him surpasses that of most adults. He loves orange Cheetos, leaf blowers, vacuums, baking and practicing his basketball ‘skills’ with dad.
Cooper suffered his first seizure at 7 months old. It lasted 35 minutes and required multiple days in the hospital. Up until that point, he was a ‘normal’ happy baby reaching all his milestones and melting hearts. Cooper proceeded to have status tonic-clonic seizures in the months to follow to the point where hospital trauma staff and paramedics knew the Batt family’s names and the Batts knew theirs.
Cooper was initially diagnosed with Epilepsy; however, his mom knew these long seizures, that could not stop on their own, were more. It was through googling “status seizure, baths, heat, intubation” that she came across an article on the NORD website about Dravet syndrome. Upon reading, she and her husband knew this was what they were dealing with. Over thenext few weeks, they were able to get in touch with a Neurologist in the Atlanta area who was listed on the Dravet Syndrome Foundation website. To this day, they know if they hadn’t found that article, or found a proper doctor through this organization’s website, Cooper would be far worse than he is today.
After genetic testing, Cooper was officially diagnosed with Dravet syndrome at 11 months old. At the time, they were 7 months pregnant with their second child. After their genetic counselor suggested they each be tested for the gene variation, they learned Whitney actually carried the mutation and had a 50% chance of passing it on to their second child. You can read about his brother, Colton, below.
Cooper’s childhood has been HARD to say the least. He has been intubated 3 times, had hundreds of seizures, dealt with toxic levels of medications, horrible side effects and injuries from seizures. 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 2 to 3 tonic-clonic seizures a month but the family is able to handle all at home and has not received rescue meds in over 6 months.
The Batt family hopes to one day have a cure for Cooper, his brother, and all the other Dravet children who continue to fight though their challenges and inspire others along the way.