I am Dad to Hayden, Ceri and Iwan and we live in North East Wales with my wife Heather. Iwan has Dravet syndrome and has had a positive test for a mutation in his SCN1A gene. Iwan Attended mainstream until Reception when he transferred to Special Needs Education, transitioning via an assessment unit.
My Dravet journey started when I arrived home from a long commute to an ambulance blocking the road outside my house: Iwan, then aged 8 months, was having a prolonged seizure and was just being transferred to Accident and Emergency. So it was back in the car and chasing an ambulance down the road, something that I have had to do too many times. Iwan was initially diagnosed with febrile convulsions, then complex febrile convulsions and Epilepsy over a period of three years and was put on a series of different anti epilepsy drugs some of which made things worse.
In December of his first year we received the genetic testing back confirming that he had a mutation of the SCN1A gene and had Dravet syndrome. We were aware of Dravet Syndrome UK through a contact and now close friend we had made whose daughter also has the condition. We immediately contacted them and joined the Facebook forum where we were welcomed and began learning from the experts. We have since attended events such as Centre Parcs annual getaway, a Christmas Party, a Dads day out and bi-annual conference. I have also been involved in fundraising walks which has re-ignited my love for the mountains.
I was delighted to be asked to be a Trustee of Dravet Syndrome UK and I am happy to be able to give something back. I am passionate about Dravet Syndrome UK and I am very proud to be a part of the team.