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Benton

Tell us about yourself and the Dravet patient in your life
Hello we are the Lay family and we live in Missouri. My husband and I have two boys Finley and our Dravet Warrior, Benton. Both boys are rough and tough. They love to play outside, swim, cook, and play on their tablets. Hanging out with our family and friends brings us joy!

When did the patient’s seizures begin?
Bentons seizures began at 8 months old. He was a happy, healthy baby before then. The early days were really tough we were in the hospital at least once a month and sometimes twice. It was so tough on our family. We also had a 2 year old at the time and it turned his word upside down. Bentons seizures were long and we asked for genetic testing. After many months of prolong seizures that were hard to stop. Some lasting an hour and a half, they finally at 16 months old they diagnosed him with Dravet.

What is your hope for the future of your loved one? For the Dravet community?
My hope is for a cure💜

What advice do you have for newly diagnosed Dravet families?
Take it day by day. Stay strong and if you are comfortable enough, share your story to help spread awareness.

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