Andrew is the light of our lives. He brings joy, love, and gives the best snuggles, everywhere he goes. His go-with-the-flow, happy, intuitive, personality reminds us to appreciate the little things that many take for granted.
Andrew was 6 months old at the time of his first seizure. He was rushed to our local hospital where he was cared for and once stable, 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 a big seizure occurred, were actually myoclonic seizures. They looked like a baby startle reflex; they were so quick but still disruptive. With time, seizure types continued to evolve, varying to include atonic/drop, absence, and clonic. Medication after medication the seizures progressed, hospital admissions continued, and finally, genetic testing revealed a misspelling in one copy of his SCN1A gene.
Today, at 3 years of age, Andrew experiences global developmental delays but with time, is reaching milestones! Andrew is on the Medical Ketogenic Diet at the 3:1 ratio which has provided better seizure control for the last two years. Every meal consumed is measured to the 1/10th of a gram, is very high in fat, low in protein, and carbohydrates are minuscule. There are no “cheat days” with medical keto; it is considered medication and must be followed perfectly. As hard as the diet is to follow living in this food centric world, we recognize its value; it is giving Andrew the chance to develop and grow. Additionally, the medical diet has provided us the opportunity to wean harsh medications and provide more and more seizure free days.
Andrew is our hero. Our hope is that one day, he and all Dravet syndrome warriors can enjoy all that life has to offer without the limitations that Dravet syndrome brings. But for now, we will truck on, raise awareness and funds to support cutting edge research, and most importantly, enjoy our incredible guy.
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