Dravet Stories

Dravet Stories

Teko 300

Teko

Tell us about yourself and the Dravet patient in your life My name is Mariam, mother to a Dravet syndrome patient. Close to Lake Victoria, in Kenya, a strong and brave little boy known as Teko-was born a healthy boy, very handsome and sweet. Teko loved to sing and could imitate his father singing and […]

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Dominic 300

Dominic

Tell us about yourself and the Dravet patient in your life Our family of four lives in the small but mighty town of Pitman, located in south Jersey. However, our Dravet journey began in Boston. After meeting in college in North Carolina, my husband Adam and I moved to Adam’s hometown in Massachusetts where we

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Bauer Image300

Bauer

Tell us about yourself and the Dravet patient in your life? We live in Wisconsin and are a family of four that consists of mom, dad, Bauer and his younger brother Bryden. We enjoy bike riding, boating, fishing and swimming.  When did the patient’s seizures begin? Bauer’s seizures began at 3 months old. They started

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Bentley image 300

Bentley

Tell us about yourself and the Dravet Patient in your life My family and I live in Crossville, Tennessee. We love spending every day with our little warrior and watching his favorite movie, Toy Story. When did the patients seizures begin? Bentley’s first seizure was when he was 4 months old. It was a short

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Dravet child with head on mom's shoulder

Cora

Tell us about yourself and the Dravet patient in your lifeThis is Cora. She is a 2 year old sweet and sassy little lady. She is a pandemic baby! She has an older sister named Maggie. Her mommy is Jen and daddy is Chris. She has a pet dog named Lager and a fish named

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Jacob Dean

Jacob

Tell us about yourself and the Dravet patient in your life Hello, This Is Jacob Dean. Jacob lives with his mother & step dad. We are from NE Ohio. He is going to be 11 years old August 2022. Jacob really enjoys skateboarding, he doesnt know how to push, but he can ride & hold

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Sophia Miller

Sophia

Tell us about yourself and the Dravet patient in your lifeI’m a single mom to my beautiful 11 year old daughter Sophia. We currently live in Aurora, CO. We love singing, dancing, reading books, cooking, and painting together. Other favorites of Sophia are bowling, riding her tricycle, playing board games, and going to school. When

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Musa Yamout

Musa

Tell us about yourself and the Dravet patient in your lifeMusa is a happy baby, loves to explore and eat almost everything. He has 3 older siblings that love him so much! He loves the water and to be outside. We live in Dallas, TX! When did the patient’s seizures begin?Seizures started at 4 months

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