From helplessness to gratefulness

Braden and Nana Roz Kaye

By Roz Kaye, great grandmother of Braden.

Andria Bilan, CEO of JoshProvides, encouraged me to submit this blog for the JoshProvides website. She thought that it could be helpful to other families who suddenly face a diagnosis of epilepsy for a loved one. We are fortunate to have this wonderful resource, JoshProvides Epilepsy Assistance Foundation, in our local community to support families and individuals, like me, who don’t know where to turn for help and information.

In December 2021, my beloved great grandson Braden began having seizures. His epilepsy came on with unbelievable ferocity. He was having more than 100 seizures per day, ending up in the emergency room at Children’s Hospital frequently. His seizures were unresponsive to medication. He was on three medications and instead of a lively, sweet 3-year-old, he was drugged and unresponsive. I felt enormous pain and helplessness as I watched my daughter and granddaughter struggle trying to find an answer for his illness.

The answer came with a consultation at Johns Hopkins in Baltimore with Dr. Kossoff and his team. Braden was diagnosed with Doose Syndrome, a rare seizure disorder characterized by frequent myoclonic and myoclonic-atonic seizures.  He started on the pediatric ketogenic diet and within about one month he was seizure free. It is now over one year, and he is off all medications and continues to be seizure free.

My granddaughter calls Braden her superhero but, in truth, she is mine. The diet is difficult, and she is amazing in her creativity to make the diet work for him and their whole family.
Last month we celebrated his fourth birthday, and it was such a treat to see him being a happy, playful 4-year-old who attends preschool, rides a scooter, is learning to swim, etc. One year ago, we could not have imagined this. I am beyond grateful.