Christmas Appeal 2024

Christmas should be one of the happiest times of the year but little Ronnie, 17 months old, is facing the festive season without his beautiful mum, Daniella.

Tragically Daniella died in her sleep earlier this year from Sudden Unexpected Death in Epilepsy. She was just 30 years old - Ronnie was six months old at the time.

Daniella was one of the 200,000 individuals with epilepsy who experience uncontrollable seizures. Genomics research will help us to find more personalised treatments and to understand why seizures can affect more than one member of a family, and why such tragedies happen.

Following the sudden loss of her sister, Georgia is burdened by anxiety about what could happen, particularly when she thinks about being alone at night.

Georgia, 26, who has had epilepsy for 13 years, herself, worries that she might also pass away from a seizure when she is asleep. 

Georgia has a son who has just started school. Being a single parent and having Epilepsy concerns her more now since the loss of her sister to Sudden Unexplained Death in Epilepsy.

“She was the only person I could go to who understood what it was like going through epilepsy, if I was hurt, we could understand each other. I have lost a part of my childhood, my dad passed away when we were young and Daniella and I used to speak about our childhood together, she was the only one I could share those memories with. I don’t have anyone to speak to that really understands what I go through. I used to call her every night on the phone or facetime her to chat, not being able to do that is very hard indeed.”