Tell us about yourself and the Dravet patient in your life
We live in Warton, Preston Lancashire, Tayla-mai has two older siblings, we enjoy going on dog walks and playing football in the garden.
When did the patient’s seizures begin?
Tayla-mai had a chest infection when she was 6 months old, I’d put her down for a nap and she started seizing. This was her first ever seizure but after this one they were regular. It was very scary. I’d never seen a seizure before. After more hospital trips the doctors tested for Dravet. Her paediatrician has a son with Dravet so manages to diagnose early as they were the same pattern.
What is your hope for the future of your loved one? For the Dravet community?
I hope there is a Cure eventually no one wants to lose their child.
What advice do you have for newly diagnosed Dravet families?
Take each day as it comes, in my experience until the medication works its a very uncertain bumpy road but now we are pretty controlled and only seize once a month if that.
