A dad from Sheffield whose son has a debilitating muscle-wasting disease is set to speak in Parliament, calling for more specialist care for sufferers of the condition.
Harley Creswick, aged five, from High Green, has Duchenne muscular dystrophy, and his dad Mark, 36, will be giving evidence tomorrow to a panel of MPs investigating how the NHS can pay for new treatments for rare genetic illnesses.
Mark says he is worried cutting-edge treatments may never reach his son.
He has set up Harley’s Fight Foundation, which recently collected £1,700 for the Muscular Dystrophy Campaign charity with its first fundraiser, a night of dog racing at Sheffield’s Owlerton greyhound stadium.
Harley’s condition affects just 2,500 youngsters in the UK, and the pupil at Chapeltown’s Coit Primary School is not expected to reach his 30th birthday.
Mark is giving evidence to the All Party Parliamentary Group for Muscular Dystrophy, which is conducting an inquiry into the availability of treatments.
Mark, who lives with wife Dawn and their daughter Freya, two, said: “There were long delays in Harley being diagnosed and you worry there is still a lot of work to be done in terms of specialist care for muscular dystrophy.
“If we do find a treatment for Duchenne, we need enough specialist centres to make sure we can help as many children and young people as possible.”
Duchenne causes muscles to weaken and waste.