Before August 26, 2017, we knew nothing about epilepsy. We didn’t know that 1 in 26 people will be diagnosed with epilepsy in their lifetime. We didn’t know how severely underfunded epilepsy is compared to other neurological disorders. We didn’t know how crippling, life-changing, and heart-breaking this diagnosis could be.
All of that changed when Dominic, our happy, healthy, two-year-old boy, suffered his first seizure. Within two months, he developed four different seizure types and was taking four anti-epileptic medications in an attempt to combat them. I watched my son go from an energetic, gregarious toddler to having over 1,000 seizures in a single day. There aren’t words to describe the grief of watching him suffer, nor the torture of speculating the unknown for him and our family.
He was eventually diagnosed with Doose Syndrome, a rare and severe form of childhood epilepsy that is notoriously resistant to medication. Since the onset of seizures, Dominic has had thirteen hospitalizations, nine ambulance rides, a helicopter flight, and more pokes and prods than any child should ever know. In November of 2017, Dominic was placed on a medically prescribed version of the ketogenic diet, which means that all of his meals are calculated to a specific ratio and every ingredient is weighed to the tenth of a gram. While the diet is difficult and restrictive, it’s the only treatment that has proven to be effective. He has improved significantly, but we are still striving to attain seizure freedom.
There is so much work to be done in the fight against epilepsy. My mission is to share Dominic’s story in order to spread awareness and educate people about epilepsy. Our Dominic’s syndrome is rare, but epilepsy is not. We need a cure, and that comes through research.