Shared by Mom, Shanice - Rochester, Minnesota, USA
Noah is 17 months old and lives in Rochester, Minnesota. He had his first seizure at 6 months old while napping in my arms. His arms twitched, his eyes rolled, and the seizure lasted around 6 minutes. He was unresponsive. At the hospital, he had a 101°F fever and tested positive for COVID-19. We were told it was likely a febrile seizure and sent home.
At 10 months, Noah had a second seizure in the bathtub. It lasted 25 minutes and didn’t respond to rescue meds until IV medication was given in the emergency room. He wasn’t sick or feverish, so genetic testing was ordered. Three days later, we learned Noah has an SCN1A mutation—undocumented and not inherited—and he was diagnosed with Dravet Syndrome at 11 months old.
Treatment Journey
Managing treatment has been difficult. Medications caused serious side effects like low platelets, bone marrow toxicity, irritability, appetite loss, and insomnia. For weeks, he barely ate and slept. After adjusting his meds, Noah is now eating, sleeping better, and back to his happy self.
Therapy & Development
Noah currently receives physical, occupational, and speech therapy. Therapy options are limited due to his age, but we’re exploring more as he grows.
Noah’s Personality
He’s a high-energy, curious, and goofy little boy. He loves music, dancing (especially to The Wiggles and Bluey), animals, books, lightsaber battles, and playing in water. His favorite toys are birds, dogs, and dolls.
Hopes for the Future
We hope Noah lives a full, joyful life—free to walk, run, and enjoy summer without seizures. We want him to grow up happy and able to chase whatever dreams he has.
Family Impact
Dravet has taken a toll. Noah struggles with balance, leading to frequent falls and even a chipped tooth. He has a G-tube for medication and a portacath due to difficulties with IV access. He’s been intubated, and has needed oxygen multiple times, his longest seizure being 90 minutes. The fear of SUDEP is constant. Still, Noah is strong and brave, showing us how to keep going. We try to give him as normal a life as possible.
Why the Dravet Syndrome Foundation Matters
The Dravet Syndrome Foundation has been a blessing—connecting us with other families, helping with tough decisions, and providing support and vital information. Their research gives us hope for better treatments—and one day, a cure.
Noah’s 2-Year Update
Shared by Mom, Shanice – Rochester, Minnesota, USA
Noah is now 2 years old, and while Dravet syndrome continues to be part of our daily life, so is so much joy. Each day brings its own challenges, but it also brings moments that remind us how strong and determined Noah truly is.
Noah continues to navigate life with Dravet syndrome, including ongoing seizure management and therapies. He receives physical, occupational, and speech therapy, which help support his development and independence. Progress may look different for Noah, but every step forward is meaningful and celebrated.
Despite everything his little body has been through, Noah’s personality shines. He is happy, curious, and full of energy. He loves trucks and diggers, is fascinated by colors, and absolutely loves dancing. Music lights him up, and his joy is contagious.
As a family, we continue to balance medical needs with giving Noah the most normal childhood possible. There are still hard days and unknowns, but there is also so much hope. Noah teaches us daily about resilience, strength, and living fully in the moment.
At 2 years old, Noah is not defined by Dravet syndrome. He is defined by his laughter, his determination, and the love that surrounds him.