We are the Clark family, and this is our story with epilepsy:
My 4 sons, Henry, Lucas, Blake, and Phillip, are 15, 12, 10, and 7, respectively. They are all neurodivergent and have epilepsy. I, myself, was diagnosed with childhood absence epilepsy as a kid, and autism and OCD as an adult. I am very grateful to have been seizure free since I was 16 and not had to take seizure medications since I was 19.
Henry’s seizures started at age 7. He was diagnosed with childhood absence epilepsy. He has had 5 tonic clonic seizures, two of which were during illness. Right now, he is almost 1 and a half years of being seizure free, and we plan to start weaning meds. He also has ADD, dyslexia, social anxiety disorder, and dyspraxia.
Lucas’s seizures started at age 4 years. He was diagnosed with childhood absence epilepsy, and then about one year ago with juvenile myoclonic epilepsy. He has tonic-clonic, absence, and myoclonic seizures. He also has autism, ADHD, dyslexia, sensory processing disorder, Tourette’s syndrome, DMDD, and OCD.
Blake’s seizures started at age 2 years. He was diagnosed with childhood absence epilepsy. He has only ever had absence seizures. He also has autism, OCD, dyspraxia, ADD, and hyperlexia, and has been identified as gifted.
Phillip’s seizures started at age 5 years. He was diagnosed with myoclonic-atonic epilepsy, AKA Doose syndrome. He primarily has myoclonic, absence, and myoclonic-atonic seizures, but has had 4 tonic-clonic seizures. He also has autism, hyperlexia, and Tourette’s syndrome, and has been identified as gifted.
4 boys and 1 parent living under the same roof with all these diagnoses is, as one would guess, really challenging. Luckily, when you add my incredible spouse to the picture, it’s a much nicer picture. We make it work—we laugh, travel, and do almost everything other families get to do. Some days really suck, but the smiles and good days make it all worth it. Epilepsy might steal the moment, but it doesn’t rule our lives.
I believe there will be a cure in my boys’ lifetime. We are getting closer with every study, every trial, and every grant. It will be absolutely amazing to stop worrying about seizures.