Epilepsy entered Michelle’s life September 1, 2007 when she witnessed her then 4-year-old son, Lukas, have his first seizure. That first call to 911 evolved into countless hospitalizations, medication trials, infusions, and diagnostic tests, culminating in a hemispherectomy, his most recent surgical procedure.
In 2017, Lukas was diagnosed with Rasmussen’s Encephalitis (RE), a rare childhood autoimmune disorder that atrophies one hemisphere of the brain, causing irreversible brain damage and physical impairments. Lukas’ seizures stemmed from this ailment.
Unfortunately, like most autoimmune disorders, there is no cure for RE and surgery was the only option. The surgery left Lukas with Broca’s aphasia. He understands language but it is difficult for him to communicate. The road to rehabilitation will be long, but he is now seizure free.
This ten-year journey through the world of epilepsy has motivated Michelle to become an advocate not just for my son, but also for others dealing with epilepsy. She has become involved with the Brain Recovery Project, a group dedicated to recovery after pediatric brain surgery, and serves on their parent advisory committee. She plans to finish the final semester of her graduate program, where she is specializing as a family nurse practitioner. Michelle aspires to work with a pediatric epileptologist following graduation.