Donovan, better known as Van, is the most incredible, resilient person I have ever met. He was born preterm at 30 weeks, and spent some time in the NICU before being sent home. In infancy, he met all of his milestones, always just a bit later than other babies. He has always gotten sick more frequently and severely than his two siblings and was diagnosed with failure to thrive at one point. Despite the challenges, my baby boy smiled through it all.
At 9 months old, however, Van’s life would be forever changed. It started with absence seizures, but, shortly after starting his first of many seizure medications, he began having relentless myoclonic seizures. Hundreds and then thousands each day. Development slowed to barely a crawl.
His first tonic-clonic was at 14 months old. 16 minutes long. Each one after seemed to be longer than the last. Hospitals, monthly, and then weekly or daily. Anticonvulsant after anticonvulsant. Atonic seizures developed. Second birthday came and went. Van started having focal seizures. We had to resuscitate him for the first time—the most terrifying thing any parent can experience.
He’s 4 now, and things aren’t any easier. We’re in the hospital a couple times a month during easier times, and admitted for weeks on end during tougher times. In all honesty, there are more bad days than good. Van turns out to have an extremely rare genetic mutation, causing his condition to be severe and intractable. Every treatment has failed to give him much relief. Epilepsy will continue to rule our lives without a cure, but we won’t give up.
Van has barely any speech, and, on tough days, struggles with basic skills like walking, eating, and dressing. Behaviors can be really challenging. After more severe seizures, he sleeps through the entire day. Medication side effects give him a rash, make him vomit, cry, or refuse to eat. He has to be monitored around the clock. Any seizure could be the one that takes him from us. His heart has stopped 3 times, and he has been intubated 5 times. He’s a little boy, and I’ve watched the life drain from him and been unable to help, multiple times. The reality of Donovan having epilepsy is that it is terrifying and incredibly traumatic to the whole family.
We do our best to give Van and his siblings a good life. Parks, museums, beaches…until epilepsy steals the moment and he has a life-threatening seizure. We can’t ever be far from a hospital or without his rescue medicine, pulse ox, and oxygen. We have to try though, because, with the severity of his condition, there’s no knowing how long we have him for. We need a cure, and we need it now. I won’t ever stop fighting for my son.