Daisie, three, is learning to live with a rare form of epilepsy.
Diagnosed as an infant at just two months old, Daisie’s family learned she had developmental epileptic encephalopathy due to a faulty gene called STXBP1. Having worried that her condition may be due to a terminal condition that would have meant Daisie would not see her second birthday, the subsequent revelation of a rare epilepsy diagnosis became a lifeline, filling the family with a profound sense of relief and gratitude.
Daisie’s parents noticed unusual movements when she was only eight weeks old, after a long winding road to her final diagnosis, Daisie has also been diagnosed with a global development delay and weak muscle tone leaving her unable to walk or talk. Daisie's mum, Kelly, has spoken of the fear of introducing Daisie to places away from home, worried that leaving her with others that don’t understand the subtle nuances of her condition and with Daisie unable to communicate them will make her vulnerable.
Kelly explains:
Daisie is a very smiley girl. We were told she would never smile or laugh so we literally celebrate every smile we get from her. She loves play-fighting, so we move her arms like she’s boxing, and she loves that rough play.
She loves crafts and we paint a lot. She’s a music baby, she loves Rod Stewart particularly! She also loves hearing other children, she’s always happiest around other children.
Kelly has spent her time not only supporting little Daisie, but also spreading awareness of her condition in a bid to make more people aware of what Daisie and other children like her face on a daily basis. Having been through the diagnosis journey at a time when the whole country was in lockdown, Kelly wants to make sure any other families going through the same thing feel they are not alone.
At Young Epilepsy, we know that increased awareness about epilepsy can pave the way for more compassion and understanding. Daisie's story highlights the messaging behind Purple Day – a global initiative dedicated to raising awareness about epilepsy on 26 March. Purple Day is our chance to make a real difference in the lives of those with epilepsy. It's not just a day; it's a movement, and we at Young Epilepsy want you on our team! Because with your support, anything is possible.
By supporting initiatives like Purple Day, we contribute to a world where individuals like Daisie can live without the weight of stigma and misunderstanding. Let’s stand together, as advocates for children and young people, like Daisie, and countless others.
Show your support and help us create a future where young people with epilepsy are heard, and they get the support they need, when they need it, no matter what.
Do you have a question about our work? Please click on the link to find out the best person to email or call.
