Upcoming EL-PFDD Meeting February 3rd!


2021 Dravet Syndrome Awareness Month

By |2021-05-25T11:20:26-05:00May 28th, 2021|Categories: Decoding Dravet Blog|

Your commitment and engagement as part of the DSF community has been instrumental in the progress that has been made for patients and families living with Dravet syndrome in the last decade. Now more than ever, we need your help!  Dravet Syndrome Awareness Month takes place each June in the U.S. This is our annual [...]

Meet Andie

By |2021-05-17T17:23:47-05:00May 17th, 2021|Categories: Dravet Stories|

About Andie Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together [...]

Meet Kiyonori

By |2021-05-17T17:35:31-05:00May 17th, 2021|Categories: Dravet Stories|

About Kiyonori My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run. When did Kiyonori's [...]

Meet Royall

By |2021-05-17T17:36:21-05:00May 17th, 2021|Categories: Dravet Stories|

About Royall Hi my name is Ericka I am 26 years old and was blessed with my precious Royall on August 18. My son was diagnosed with Dravet syndrome in December, it has been a rough road expecially when you have no knowledge of it, but I am a women of strong faith and I [...]

Meet Matthew

By |2021-05-17T15:53:01-05:00May 17th, 2021|Categories: Dravet Stories|

About Matthew Our family lives in Georgia. I'm retired Army, and my husband is in the Reserves. My son is 8 years old. I enjoy crocheting and taking care of our mini farm. I have two other children who are 6 & 5. I also love hearing Matthew vocalize and laugh. When did Matthew's seizures [...]

Meet Colton

By |2021-05-17T15:21:49-05:00May 17th, 2021|Categories: Dravet Stories|

About Colton We live in New Mexico and we like to go camping and hiking as a family. When did Colton's seizures begin? His seizures started at 5 months. He had multiple status seizures that lasted between 5 minutes and 2 hours, which is why he got genetic testing. What is your family's hope for [...]

Meet Zara

By |2021-05-17T15:15:40-05:00May 17th, 2021|Categories: Dravet Stories|

About Zara We live in Ottawa Ontario Canada. I am married with 2 daughters the younger one Zara has Dravet syndrome. Being all together brings us joy, we enjoy family dinners and playing at home. When did Zara's seizures begin? 5 months old. The early days were very bad for my daughter she suffered with [...]

Meet Will

By |2021-05-17T15:01:43-05:00May 17th, 2021|Categories: Dravet Stories|

About Will We are a military family with 3 amazing kids. Will, our Dravet kiddo, is the middle child at 3 years old. We live in the Show Me State, Missouri. We live in a whirlwind of school and therapies but love being outside as a family. When did Will's seizures begin? Will’s seizures began [...]

Meet Berkley

By |2021-05-17T13:22:46-05:00May 17th, 2021|Categories: Dravet Stories|

About Berkley 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 [...]


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