Our fight for our son

Edward with his parents Heidy and Paul

IT IS hard to believe Edward Ackroyd isn’t a perfectly healthy eight year old.

But the lively Saddleworth youngster has an incurable muscle wasting disease.

He will become wheelchair-bound as he gets older because of the degenerative condition Duchenne Muscular Dystrophy (DMD), which degrades every skeletal muscle.

Determined parents, Paul and Heidy have been fierce fundraisers for charities since their son was diagnosed in 2007. Tens of thousands of pounds has already gone towards finding a treatment for this worst form of muscular dystrophy.

Paul (43), father of three boys, said: “There is potential treatment out there, and we are determined to find it within three to five years.

“When we found Edward had the condition, it was shocking. It just rips you apart. We need to make people aware.”

DMD affects around one in every 3,500 boys and can also - rarely - affect girls. There are about 2,500 boys with the genetic disorder in the UK at any time.

Edward, who is a Delph Primary School pupil, can still walk, but his dad, a solicitor, said his son is already slowing down.

He said: “He can’t manage long distances. He has become quite anti-sport..”

The family is supporting a fundraising gala at the White Hart, Lydgate, next Friday, in aid of Duchenne Now — a charity set up last month.

The evening includes entertainment and a three-course meal. Tickets are £30 (Karen McEwen, 07970-972 674).

Find out more about the charity at www.duchennenow.org.