Berkley Dravet story

We are a family of four with two daughters. Berkley is the youngest (1 1/2) and Sawyer is 3. We enjoy spending time with each other, nature, and the simple things in life.

When did Berkley’s seizures begin?

At 4 months old I noticed what looked like tremors in her arms after nursing occasionally. For the next couple months we saw doctors and neurologists while trying to narrow down the cause. At around 6 months old she had her first full body seizure. We spent the next two months in and out of the hospital with status seizures and still no clear idea of diagnosis. At around 8 months old we got her DNA results back with SCN1A mutation. It has been extremely difficult for our family to adapt to the changes that her health needs bring.

What is your family’s hope for your future? For the Dravet community?

We have tremendous hope for a cure for Berkley and all those who suffer from Dravet syndrome.

What advice do you have for newly diagnosed families?

Do your own research. Ask all the questions. Be a strong advocate for your loved one. Let your family continue to live their lives. Hold onto the hope for the future.

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