Our daughter was perfectly healthy and typically developing until age 3 when she started having seizures. Within weeks, she was having over 50 seizures a day despite taking multiple seizure medications, and she was diagnosed with Rasmussen’s encephalitis (RE). My family was lucky to connect with another family at our hospital whose daughter had just had a hemispherectomy due to RE a few days earlier. They were an incredible support to us in the months leading up to our daughter’s left functional hemispherectomy in 2019.
Since then, we have continued to benefit from all the information and knowledge we get from the Pediatric Epilepsy Surgery Alliance as we’ve navigated school, therapies, sports, and the rest of life after epilepsy surgery. Today, our daughter is thriving in ways we didn’t dare to dream of back when we first received her RE diagnosis.
Being a parent support navigator is my small way of giving back.
Languages spoken: English