Our long journey, which we are still on today, began when Scarlett started to take her first steps at 18 months. Scarlett was so wobbly on her feet, we spoke our our GP who then referred us to Alder Hey.

Scarlett has spent most of her walking life in and out of Alder Hey. Without a correct diagnosis we felt so lonely so helpless because we wanted to help Scarlett so much.

After years of refusing to give up, last August, when Scarlett was 8, she had a muscle biopsy which showed that she has mitochondria complex 1 deficiency. It explained why Scarlett tires so easily, why she struggles with balance, why she struggles with basically everything on a daily basis.

We are still waiting for the genetic results from Newcastle to hopefully
understand prognosis. Scarlett can’t walk much at the moment without getting really tired and can barely write.

I feel its a race against time because it is a progressive disease. I am passionate to help raise awareness, which will lead to more support, more funds. Therefore more hope to help find a cure for this crippling disease.