Dravet Syndrome Stories From Those Who Know
Designed to give you insight into raising a child with Dravet Syndrome, living with Dravet Syndrome or having a brother or sister with Dravet Syndrome.
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....
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...
Morgan was a well little baby till he had his last of his DTP injections at 4 months old; 4 hours after this Morgan had his first seizure lasting approx 45 minutes. Initially doctors told us, after 1 week in hospital and numerous tests, that it was just something that can happen from injections. The next day and still in hospital Morgan had 2 further 45 minute seizures and was diagnosed with epilepsy and sent home with anti-epilepsy drugs a week later. Read More...
Vanessa, born 10th December, 1993, lives with her parents, John and Maggie in Melbourne , Australia . Vanessa was just four months old when she had her first seizure, twelve hours after her Triple antigen immunization. This seizure lasted thirty five minutes. We rushed her to hospital not knowing what was happening to her. We were told by the hospital it was just a febrile convulsion due to her having a fever and were sent home. Read More...
I don't have the words to describe the feelings of watching the ER doctors pump drug after drug into his little body without resolution. Before this could happen they had to get an IV into his tiny vein, which always took several attempts by different people. After the seizure would finally stop there was still more to go through. Read more...
I get to notice all the different colours of his eyes when he has an absence. I can count all the freckles that sprinkle his face when he is post ictal and everytime a new one appears I know that is recently accquired. It is music to my ears when he says three little words - I la you (I love you) and I don't take them for granted. Read more...
96% Likely to have Dravet Syndrome
We have a very beautiful little girl who was recently branded as over 96% likely to have dravet's. We are still awaiting our results from the test sent to the uk. We have had social workers and the head specialists talk to us as if the results are already positive, some have been great and some, in our conversations have completely written her off. Our specialist at the local children's hospital is fantastic; he is very straight talking and gives us all the information as he recieves it. Read more...
My daughter Hailey is now 31/2 years old we just found out a couple of months back that she has Dravet syndrome. At first the news was devastating, who am I kidding it still it is. Read more...
Ella-Rose: Dravets And How My Daughter Has Been Diagnosed
Today is the day after being informed that our beautiful little girl has dravet syndrome. We are devistated. Ella-Rose is a beautiful 23 month old girl how has the sweetest personallity any parent can wish for. We were 1st aware of her seizures at 11 months, since then they have progressed and we have constantly been in and out of hospital trying this drug and that drug. Read more...
Katie and Aimee: Being a Big Sister
Aimee is our youngest daughter. She was born
is September 2005 and was eagerly awaited by her big sister, Katie, who is 2 years her senior. Aimee was a very easy baby and Katie thought she was “fab” from day one. Then when Aimee was
just under 4 months of age she had her first seizure – turning all our lives totally upside down, especially Katie's. I would like to take this opportunity to write about how Dravet syndrome
has affected Katie and the stages she has gone through in her short life. Read more...
Elise and Lauren: The story of two sisters living with Dravet Syndrome
Sister Lauren says " I love Elise so much
that I pray secretly behind my locker or desk at school that she won’t have Dravet Syndrome anymore. I hope that God will take Elise’s seizures away. One of my favorite memories with my
sister Elise is to go outside and play in the fort on a really beautiful day. I understand her condition and love her anyway.” Read More...
Balancing Work and Life Responsibilities
I am the mother of three daughters. Our middle daughter is 14 and has a genetic disorder, Dravet Syndrome, causing intellectual disability, unstable epilepsy and a number of associated conditions. I now work from home in order to be able to also provide the care our daughter requires. Read More...
Video - National Walk for Epilepsy 2009 - Team Dravet
Earlier this year a group of families affected by Dravet Syndrome came together for the National Walk for Epilepsy in the US to raise money and awareness for Dravet Syndrome, here is their story. Read more...
Recommended Links
Shazza's Offering Dravet's information, fun activities for the kids, disability information and places to find assistance with disability and epilepsy issues world wide and more locally to South Australia.