My Wife and I are going to walk a marathon in London on 28/09/2019 with our target being to raise at least £100 per mile towards rehab including physio’ sessions, equipment & communication technology to help our amazing Niece, Elaina who battles everyday to try and be the best she can be.

Elaina was born August 2014 a gorgeous, healthy baby. At 4 months old she started having seizures and was diagnosed with epilepsy. Over the next 18 months Elaina went through many hospital visits, medication adjustments and further seizures with these getting longer. These lasted anything from 30 mins’ to 2 hours on a regular basis. By the time she was 2 she had had 29 big seizures, 4 intubations & 2 stays in Paediatric ICU. Despite all this Elaina never stopped smiling. The way she could bounce back after yet another blue light trip to hospital, spending time in paediatrics to recover from the effects of another seizure, was simply amazing. You couldn’t knock the determined spirit out of her. Elaina was still developing too, achieving every milestone and being the mischievous toddler that she should be.

On my Birthday, 12th August, in 2016, 3 days after her second birthday, I was waiting for my family to join me for lunch. Elaina, her Mummy (my Sister), Daddy and big Sister did not arrive. It was a couple of hours before I got the news. Elaina had been having a nap when she’d had another seizure. Her care plan was followed and everything went to plan until her heart stopped for 8 minutes. None of us knew then, but Elaina was never going to be the same again. After 5 days in intensive care, Elaina had an MRI. We were told she was severely brain damaged and might not live.

I am totally amazed everyday at how hard Elaina fights to overcome all that she has been dealt. Elaina should not have to go through everything she does every day. Stretches, physio, AFO’s, being tube fed, relearning to eat puree, using specialist equipment to sit, stand and walk, trying so hard just to be able to regain her head control, hold a toy or look at something, and constant medical appointments,

All these difficulties are down to Dravet Syndrome, a rare and catastrophic form of epilepsy. Despite the struggles, Elaina is a very happy girl, she laughs, loves her family and friends, adores music, swimming, dance class and being outdoors. She understands what you are saying and gives everything to communicate and get her body working again. Elaina is a warrior and inspiration