My daughter Amy was born in April 1995. She had her first seizure at 8 weeks, I didn’t know at the time that’s what it was as she wasn’t jerking just stiff and very blue.

It was very scary, and the hospital put it down to a febrile convulsion due to a high temp. This happened again a few times over the next few weeks until Amy then had a tonic clonic seizure that lasted 30 minutes. That was the start of a long battle with prolonged seizures. 

DSUK Amy's story

It became the norm for us to call an ambulance 3-4 times a week. It continued like this until Amy became immune to all emergency medications and was suffering 30-40 seizures a day. We eventually saw a neurologist when Amy was 2 years old and she was diagnosed with Dravet Syndrome, just after Amy’s little sister was born. That day remains very vivid in my memory as in that one 45-minute appointment with the neurologist our whole lives had changed forever. 

Life in those early years was extremely hard and at times very lonely. There was little support and very little information could be found on Dravet Syndrome. Sadly, DSUK didn’t exist then. Amy attended a special needs school from the age of 3 and left at 16 to attend a special needs college. As Amy became older the number of seizures Amy suffered decreased and the prolonged seizures became less frequent. 

Puberty was a tough time for Amy and seizures again increased from the age of 13 but still not as severe as they were during those first 6/7 years. Then came the dreaded transition! This was a difficult and stressful time. Changing from children’s services to adult services can be a bit of a shock. Amy found leaving school hard, it was a place she felt safe and had known for over 13 years. There were a lot of changes that took place and it took some getting used to for all of us.

Amy now attends Fairplay which is a brilliant centre for young adults age 16-25. Amy loves it here! She attends 4 days a week and she also attend’s Fairplay for ‘sleepovers’ this provides respite for Amy and gives an opportunity for her to get away for a while and spend time with her friends and of course it gives us a chance to have a much-needed break. Amy takes part in lots of clubs and activities at Fairplay including the Big Dance Project, The Signing Choir as well as learning other new skills. Some days she may go for a pub lunch or the cinema, she has even been on a Christmas shopping trip to Bruges! Amy’s life is quite fulfilled now which is what we really wanted for Amy.

Amy is lucky enough to have an amazing younger sister Ellie who helps take care of Amy and has always been an immense help even though her own life has been affected by having a Dravet sibling. Amy also has a much younger brother Louie who is also a brilliant brother. 

Amy still lives at home, but according to Amy she wants to live in her own home when she is 25! I didn’t think I would ever agree to Amy leaving home but now I believe that keeping her at home might not be the best thing for Amy in the long run. I think that Amy would handle such a momentous change better whilst she is still young rather than waiting until we are no longer able to care for her but I think we can keep her here with us for just a little while longer!