THE PARENTS of a Prestwich youngster suffering from a killer disease have travelled to London calling for politicians to act now to find a cure.
Last Wednesday, Tracy and Tony Levene, of Silverdale Avenue, took a trip to Westminster on behalf of their brave son Joey, aged three, and other boys who have been diagnosed with Duchenne muscular dystrophy (DMD).
They were joined by 200 other friends and relatives of sufferers who want the Government to spend £30 million on medical research into the condition which has a 100 per cent fatality rate, with most people dying in their late teens or early 20s.
DMD affects one in 3,500 boys and is the biggest genetic killer in the UK. It stops the body producing a protein needed to build muscle strength. As a result, muscles including the heart deteriorate.
Since it was discovered in 1986, £2.2 million has been spent on clinical trials for treatment and a cure. Tracy said that is not enough.
The couple are also pushing the Government for more specialist regional centres. At present, they have to make a 300-mile round trip with Joey to see specialists in Newcastle.
“The day has re-ignited the fight and belief that we can do this and you realise that you are not alone, and together we can achieve a lot,” said Tracy.
She added: “We hope that the politicians understand the plight of our boys and they have a golden opportunity together with the public to help stop this generation of boys slowly wasting away.
“It is still my belief that money from the Government for this cause is a right and shouldn’t be a fight.”
Esther Derber, who is fundraising manager for charity Action Duchenne, said: “Researchers are telling us that if they get this money there is a realistic chance of finding a cure or at the very least, effective ways of treating it.
“There is hope.
“There is one person in his early 20s who we help who knows that he doesn’t have long left to live.
“We can do something to change that situation in future with the right funding.”
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