Ellie and Hayden's story Duchenne Muscular Dystrophy Jeans for Genes
Ellie and Hayden's story Duchenne Muscular Dystrophy Jeans for Genes

Ellie and Hayden's story

Ellie shares what it’s like to have a little brother like Hayden.

Hayden has the genetic disorder Duchenne Muscular Dystrophy, a progressive and life-limiting muscular degenerative disease. It affects only boys and causes progressive muscle weakness. Boys are likely to need to use a wheelchair by 8-11 years of age. Life expectancy is often early 20s. There is no cure, but good treatment can help slow the progression.

Fourteen-year-old Ellie (15 in Sep), from Marlborough, Wiltshire, knows all about the challenges her younger brother Hayden faces daily but she is determined to make the most of their family life and stay positive.

“Duchenne muscular dystrophy is always going to be there,” Ellie says. “But you just try to keep going. I don’t remember a time before Hayden. I can see we are so much closer than other siblings. My friends will hit their siblings, but I have never done that as I could hurt him. Our fights are all verbal! I’m so pleased he doesn’t need to use the wheelchair much, only on days when he needs to, such as going for a walk or to the park. It is great fun pushing him up and down ramps. One time I pushed him into a curb and he fell out! He was ok though.”

Ellie adds: “We try to be as active as possible which helps to improve Hayden’s mobility. We both do karate and enjoy the katas, which are sequences. Our karate teacher is amazing. Horse-riding is excellent for Hayden as it stretches out his legs. Swimming uses every muscle in Hayden’s body, so it is great exercise Hayden also goes to the Scouts, which he enjoys, although he is not the most sociable. He can write fine, but he needs help opening bottles – he has me wrapped around his little finger when he needs help.”