A teenager with a life-threatening muscle weakness condition has inspired a fundraiser to run his first marathon.
Harry Beck, 14, of Idle , is one of only two people in the country with a rare form of myotubular myopathy, a condition affecting mostly boys at birth, which
weakens the muscles controlling breathing and swallowing and means even catching a cold can be fatal.
Many sufferers do not survive the first year of their life. Aged three months, Harry underwent a jejunostomy – an artificial opening into part of the intestine to place a feeding tube. He was fed
into his bowel 23 hours a day, linked to a machine, and spent the first two years of his life in and out of hospital.
Now Harry, who often uses a wheelchair as walking can leave him out of breath, is able to take small amounts of food normally, but is mainly fed via a tube into his stomach.
It is estimated that between one in 50,000 to one in 100,000 children are born with the disease each year, and only one per cent survive beyond the age of ten.
Harry and his family are fundraisers for the Myotubular Trust, which funds research into the condition.
Next month family friend Tony Handy is running the Salomon Kielder Marathon in aid of the charity. “I want to help this charity develop a cure for myotubular myopathy,” said Mr Handy. “Harry is an
extremely intelligent lad who is a pleasure to be around. His attitude to life is very humbling and despite facing many difficulties I have never heard him complain.
“I chose this particular marathon as it’s extremely tough and hilly. I haven’t run a marathon before and have kept Harry firmly in mind to drive my training and achieve my goal. I urge people to
learn about the condition and donate if possible.”
Tony will run the marathon on Sunday, October 7. Harry’s father, Gary Beck, said: “Tony knows what Harry has to do just to get by with day to day things. We’re very grateful to him for taking on
such a difficult task. I know he’s never run a marathon before and how much training he’s put in for this.”
Harry, a pupil at Benton Park School in Rawdon , joins fundraisers on the annual Hope Walk, a sponsored event organised by his family.
- Anyone wanting to sponsor Mr Handy can do so at bmycharity.com/tonyhandy. For more about the Myotubular Trust, visit myotubulartrust.org.