Iwan Hughes Spray
Iwan is a seven year-old boy. He was diagnosed with Dravet syndrome at the age of four. Prior to diagnosis, Iwan had all the issues associated with Dravet syndrome, but his family did not know who to turn to for help and advice. Iwan had his first seizure at eight months, a 50-minute seizure that his dad, Kelvin, arrived home from work to discover. Kelvin explains their journey and the impact that Dravet syndrome has had on the whole family.
“It is difficult to put into words turning the corner into your street after a long commute and not being able to get your car any further as there is an ambulance sitting in the middle of the road right outside our home. Iwan was having a fit and was not stopping. The feeling you have following an ambulance rushing a loved one to hospital is hard to explain. This was the start of a journey that had us and the medical profession guessing what the problem might be. Or at least my wife and the medical profession guessing, as looking back now I can see that I was in denial. I would not accept that there was anything the matter with Iwan. I was clinging to the diagnosis of febrile convulsions, then atypical febrile convulsion and then childhood epilepsy. I refused to see that there was something majorly wrong.
With Iwan having seizures day and night, Heather, my wife, was beside herself with worry. I would like to think that I was supportive, but in the true male fashion I bottled up or hid my own feelings for fear of making things worse. I was the man, I had to be strong.
My work was very good in giving me time off when needed, although again I do not believe they understood the full facts about what was going on, as I had not really told them. I tended to work harder outside office hours. I am lucky to have some great friends, although there were awkward moments in the pub. They would talk about having a difficult week because their child had a cold, or how well they were doing at school, while we were worrying about so many things – medications, training one-to-one to look after Iwan in nursery, finding a new childminder, the impact of his condition on siblings, just to name a few. But bottling things up increased my isolation.
After we requested and changed Paediatric consultant, we started to investigate and treat Iwan’s unknown condition by trying different anti-epilepsy drugs. Some that were absolutely not for Dravet and we really did see the impact of that through increased seizure activity! Eventually Heather met a mum at an epilepsy group whose child had very similar symptoms to Iwan. We requested a genetic test and Iwan’s consultant immediately agreed. In the two months waiting for the results, we researched Dravet syndrome. When our consultant confirmed the diagnosis we immediately pushed for what we understood to be – and luckily were – the best medications for Iwan and things began to improve. I think once I had something to label ‘it’ as, I could accept it, although it was a shock to have my head pulled out of the sand.
Following confirmation of diagnosis, we were accepted with open arms into the Dravet Syndrome UK community and it really has made a huge difference. The Facebook community in the private group is a great source of information, advice and support, and also a place where victories large or small are celebrated. We have been to Center Parcs three times and made some great friends. The Dads’ Night Out held there allowed me to go relax with others who know what life is like living with Dravet syndrome, but not to actually discuss the problems – to be normal! I have been on the Real Ale Train (between Manchester and Leeds) with a group of Dravet Dads and been involved in fundraising (and social) events including: walking up Ben Nevis (twice), Yorkshire Three Peaks and the National Three Peaks. The Dravet Conference was a great event, being informative and somewhere to meet both old and new friends. The Christmas Winter Wonderland party was a fabulous party for the families.
My journey has been one that follows the stages of grief: denial that there was an issue and isolation of myself through not communicating feelings and believing I needed to be strong; anger at the medical profession; depression at various stages; and finally, acceptance. I love my little boy, I would change everything if I could, but I am happy that I have come out of it a stronger and better person with great pre- and post-Dravet friends and family.”