This week we're excited to share a guest blog post by Katie Taylor, Certified Child Life Specialist and Founder of Child Life On Call. She recently interviewed Audrey Vernick, our Director of Patient and
Every October, we mark National Disability Employment Awareness Month (NDEAM). Parents ask us the same heartfelt question year after year: “What kind of job will my child be able to do after epilepsy surgery?” It’s
When my son had a hemispherectomy at age two, it stopped the relentless seizures that had taken over our lives. But years later, I was still searching for answers about his behavior, learning struggles,
Raising a child with a complex medical condition changes you forever. I’ve been walking this road for 21 years, ever since my son was an infant with catastrophic, drug-resistant epilepsy. At age two, he had
The moment you walk into your child’s hospital room, it hits you. The sterile walls, the pungent scent of the hand sanitizer, the beeping monitors, the small hospital bed – it can all feel
Guest blogger: Elaine O’Loughlin, PhD Our daughter Fiadh (Fia) was diagnosed with infantile spasms at 5.5 months old. While the spasms resolved with steroids, another seizure type quickly emerged: focal tonic seizures. Her seizures
If you’re reading this, you’re probably a parent or caregiver of a child with severe epilepsy—the kind that doesn’t just disrupt life with seizures but shapes every part of it. Maybe your child has
In December, our team attended the 2024 American Epilepsy Society (AES) Annual Meeting in Los Angeles. This conference gives epilepsy experts and advocates a chance to share research and innovations to improve care for
At five months old, my son was diagnosed with infantile spasms (IS)—a rare, catastrophic form of epilepsy. Before his diagnosis, his unusual movements were mistaken for startle reflexes, and his frequent crying was thought
My son had a hemispherectomy as a toddler to stop his seizures, and now, as a young adult, we are navigating the world of adulthood together. He graduated from high school two years ago,
