Andrew is a go-with-the-flow, happy, intuitive, resilient little boy. He’s brave beyond his years and he can brighten anyone’s day with his smile. Despite challenges due to Dravet Syndrome, and with the help our village (Doctors at CHOP and local, keto team, the Dravet Syndrome Foundation, teachers/nurses, family and friends who have become family) we do see many seizure free days and we are grateful for each one! 

Andrew’s first seizure was a tonic clonic and occurred at 6 months old and lasted over an hour. He was rushed to our local hospital where he was cared for and once he was stable, he was admitted to the PICU where he was later diagnosed with Epilepsy. After doing some research, we realized that some strange “startles” we were seeing before the big seizure were actually myoclonic seizures. They looked like a baby startle reflex- so quick. We began to see more seizure types such as atonic/drop, absence and clonic seizures. After seeing these, along with some more tonic clonics, failed medications and hospital admissions, genetic testing showed a misspelling in one copy of his SCN1A gene. 

According to his doctors, Andrew is considered “atypical” for Dravet Syndrome, but he does fall under the Dravet category. Overall, he has some developmental delays, but so far is hitting all milestones in his own time. Andrew is on the Medical Ketogenic Diet at the 3:1 ratio. Every meal he eats is measured to the tenth of a gram and is super high in fat. There are no “cheat days” with medical keto, it’s considered his medicine and must be followed perfectly. As hard as the diet is, we know we’re lucky to have something that is giving him the chance to continue to develop and grow! Due to the diet as well, we’ve been able to wean some difficult medications as well as be daily seizure free from 50+ seizures per day.

Andrew is such a light. He brings joy, love and the best snuggles everywhere he goes, and he has taught us to really appreciate the little things that many take for granted. He is our hero and hope that one day Andrew and all of the Dravet warriors can enjoy all that life has to offer without any limitations that Dravet brings. But for now, we will raise awareness, raise funds, and enjoy our incredible guy.