What is
Dravet Syndrome?
Dravet Syndrome is a neurological
condition with severe, drug resistant epilespy
Dravet Syndrome begins in infancy with frequent and/or prolonged seizures. It has an estimated incidence of 1:20,000. Dravet Syndrome was previously known as Severe Myoclonic Epilepsy of Infancy (SMEI) and approximately 80% of those affected have a mutation in their SCN1A gene.
Our mission is to support families and improve outcomes for individuals affected by Dravet Syndrome and other complex genetic epilepsies in Ireland.
—Our Mission
Our Values
Community
Nurturing our communityin Ireland
Support
Providing financial, educational and social supports
Resilience
Adapting to the challenges we face as a community
We are a small, volunteer-run charity that uses all donations to support families with children with Dravet Syndrome and other complex epilepsies.
Annual Symposium
2025 Symposium for Parents
and Caregivers
Our 2025 Symposium took place on Saturday 12th April. We were extremely grateful to have a range of fantastic speakers including international expert Professor Andreas Brunklaus, Dr. Cristina Reschke launching DS-Time Sleep Study, Dr David Lewis-Smith outlining needs in adults and Professor Bryan Lynch sharing the background of Fenfluramine as a new treatment option.
Families and their Journeys
Sharing the stories of our community
Lucia’s Story
Lucia was born on NYE 2013 after a normal delivery and the midwife said ‘she’s perfect’, turned out she was wrong..
On the 31st of Oct 2014 when she was exactly 10 months old I found her in her cot having her first seizure I called an ambulance she was still seizing when we got to the hospital and continued to seize for 40 mins. We have no idea how long she was seizing before I found her we were told it was febrile won’t happen again and we went home. Two days later we were back, a 35 min seizure, still told it’s febrile!
Cillian’s Story
Cillian was 7 months old when he had his first seizure. I was visiting my parents for the week and my husband was on a flight to New York for work. It happened suddenly and unexpectedly. Cillian began a full tonic clonic seizure after waking from a nap and continued to seize in the ambulance and then in the emergency department of Templestreet Hospital. The doctors struggled to get it under control and I thought I was going to lose him. It finally stopped, but that was the beginning of a new direction in life for us.
Caleb’s Story
Caleb is our second child and I was eager with excitement for my pregnancy with him as I had enjoyed my first pregnancy with his brother Dylan. I personally learned fast that every pregnancy is different but of all the complications experienced during pregnancy with Caleb, there was one thing really stood out- his brother Dylan was very active in the womb, whereas Caleb was quite placid except for his shakes. I remember experiencing what felt like a “shiver shake” in the tummy, the type of shake that someone would have when they feel a chill.
Abigail’s Story
Rest In Peace Beautiful Abigail, 2004-2023
Hi my name is Deborah. I’m the mother of a 17yr old daughter who has Lennox Gastaut syndrome. She was 10lb in weight when born, a big bouncing beautiful baby girl. After a while we noticed that Abigail was not reaching her mile stones. She didn’t walk until she was 21months. She didn’t speak until she was three. But she was fine. When she would learn how to do things she would do everything 100%. She soon headed off to school at the age of five.
