Dravet Syndrome Stories From Those Who Know

Designed to give you insight and share experiences of caring for a child or adult with Dravet Syndrome, from those who deal with it on a daily basis.

Landen's Story (New)

Landen He came into this world on August 3, 2012. Born a happy, healthy little boy, no one could even imagine what he was facing in his time to come. At around three months - he was noticed to have a twitching of his arm - after a bath. The very next day, again after a bath, he went in to a grand mal seizure that went on for hours. Rushing him to one hospital, it is beyond traumatic Read more....

My Power is Love - Song

Written and sung by Pad, parent to Anna with Dravet Syndrome Watch the Video....

Who Are Tiger Parents?

Here's the poem that started the term "Tiger Parents". Written by Pad, parent to Anna with Dravet Syndrome Please Read ....

Go, Go, Go Tiger Parents

Here's the poem that started the term "Tiger Parents". Written and sung by Pad, parent to Anna with Dravet Syndrome Please Read ....

Sophia's Story

Sophia is 5 years old but I would like to tell you a bit more about Sophia's diagnosis. At 5 months old Sophia took her first seizure and because she was unwell the doctors put it down as a febrile convulsion which are quite common in childhood due to high temperature. At 6 months old Sophia took her first status seizure (a seizure lasting longer than 30minutes) Read More....

Buying and Adapting an Access Vehicle

Jarod's mum, Sharon was asked by Source Kids Magazine and Variety Org about her experience with purchasing and adapting a special needs access vehicle with wheelchair ramp and hoist. Here's her answers. Please note: Services may vary depending on where you are in the world. This is based on what is available in South Australia. Read More....

Jarod's Story

Jarod was only 4 months old when we became aware of his seizures, he must have been having little jerks called myoclonic seizures for a while before that but we happily dismissed them for the normal strange baby movements that occur in most infants. There was certainly nothing normal about his first big seizure however and it was far less subtle. Read More....

I Am Exhausted

Melanie Wright is a mum of a child with Dravet Syndrome. Here she tells us I AM EXHAUSTED!!! No, I haven't done anything strenuous, I haven't been up all night, and I haven't really done anything physically tiring! I am just exhausted, ALL the time. Read More....

Nathaniel's Story

My son Nathaniel was the second confirmed case of Dravet Syndrome in 2006. He is now 9 years old and has been on several anti-epileptic drugs during his short life. He's on 4 now, Depakote, Banzel, Clonazepam, Topamax, rescue Diastat and sleep aide. He averages about 12 to 15 tonic clonic nocturnal seizures per month. Read More....

Zoey's Story

This is my daughter Zoey. As you would all know she suffers from a syndrome, called Dravet Syndrome. Dravet Syndrome is a severe seizure disorder. Zoey's first seizure was when she was 3 months old. We had tried many medicines that didn't work for Zoey. .... Read More....

Charlotte's Story

My name is Paige Figi. My six year old daughter, Charlotte, is diagnosed with Dravet Syndrome; a catastrophic pediatric epilepsy. She has significant cognitive and motor delays, brain damage, a surgically placed feeding tube for water and food, struggles to talk and walk, and needs full care in all areas of life. "Charlie", as we call her, suffered from over 300 .... Read More....

Dannielle's Story (Adult with Dravet Syndrome)

My name is Dannielle I am 27 years old I live in Australia and I am living with Dravet syndrome and would like to give you a positive outcome of Dravet syndrome Because I feel that a lot of parents see doom and gloom with dravet syndrome and not the positive potential side of it. Yes I am living with dravet syndrome. I found out I had the SCN1A gene when I was 19 years old just after I finished a modified year 12 at high school. I am married and have two children... Read more...

Nadezhda's Story

Our wonderful doctors at Primarys did some tests to figure out the cause of the seizures. When Nadezhda was about 1½ years old we finally had a working diagnosis of Alternating Hemiplegia of Childhood. This could only be truly diagnosed by the process of elimination, which turned life into a waiting game. Read more....

Alex's Story

My name is Felicia and my daughter is Alexandria, we call her Lexy.My pregnancy and delivery with Lexy went perfect. I could not ask for any better. Lexy was born January 10th, 2008 as the most beautiful and healthy baby ever. Until April 28th, 2008 when she was just laying on the bed playing and my husband and i were just talking when i turned around to look at her i saw her right arm go straight up in the air and it started twitching i knew it was a seizure. Read More....

Brian's Big Adventure

When I asked Brenda if I could share this story on DravetData.com Brenda wrote back saying "Sure! Go ahead! I want our journey to be one of HOPE and encouragement for others! We went through the dark days just like everyone else (and i DO hope people will realize that), but we survived those dark days and look where we are now! It has NOT been easy, and it has required a LOT of patience, work, persistence, planning, therapy, expense, creativity, and determination for both Brian and me, and family support, and LOTS of prayers,etc. etc. " Read More...