This is a family photo taken outdoors in natural sunlight. The family consists of two adults and two children, all standing close together and smiling. The mother, with long blonde hair, is standing next to the younger child, who is wearing a black suit and red glasses. The father, with a bald head, white beard, and glasses, is wearing a red plaid shirt and standing next to the older child, who is wearing a red long-sleeve shirt. The background is a sunny, rustic field with some plants and trees, and there is a white fence visible in the distance. The sun is shining behind the family, casting a warm, golden glow over the scene.

My husband Tim and I are parents to two boys. Our youngest son, Beck, was diagnosed with epilepsy at age 4, and our journey to accurate diagnosis and treatment was long and frustrating.

Beck’s atypical symptoms and normal EEGs and MRIs made it hard to find a provider who took our concerns seriously until I captured his seizures on video. Four hospitals later, we found Le Bonheur Children’s Hospital in Memphis, Tennessee, where Dr. James Wheless discovered Beck’s seizures were coming from deep in his brain.

Beck received a vagus nerve stimulator at age 8, which improved his quality of life but did not stop his seizures. Eventually, he underwent surgery for a responsive neurostimulator, which has kept him seizure-free. Now 10, Beck is thriving, loves singing and dancing, and hopes to be a scientist.

Our journey was isolating, but I regret not knowing about resources like the Pediatric Epilepsy Surgery Alliance, which could have provided support and connection with other families. Now, I support others in the epilepsy surgery community, aiming to equip caregivers with the knowledge they need and empower them to advocate for their children, ensuring they never feel alone.