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Carl takes fight to the top

Susannah Wright
26/ 6/2008

A MAN with a terminal muscle-wasting condition has taken his fight for research funding directly to the Government.

Carl Tilson, from Lonsdale Road, Levenshulme, handed over a petition and letters from all over the country to officials at Number 10 Downing Street, to ask for £30 million to help combat Duchenne Muscular Dystrophy.

He was accompanied by his parents Fred and Linda, and was also joined by 200 supporters of the charity, Action Duchenne, for a procession and lobby event at the Houses of Parliament.

Carl, 21, who is wheelchair-bound and requires round-the-clock care, met MP Sir Gerald Kaufman after having written to him in April.

Carl has to be fed through a tube, relies on a ventilator to sleep, and has to take steroids and heart medication. Fred, 60, said: "It was tiring for Carl, but I think it was worth it.

"He’s hoping to get an answer from the health secretary Alan Johnson, so I hope the Government will take notice."

Duchenne Muscular Dystrophy is a condition caused by a faulty gene, which affects one in 3,500 boys from birth, but hardly any girls. Those affected are born without the production of a protein called Dystrophin, and their muscles gradually deteriorate, which not only affects mobility, but also the control of the heart and respiratory systems.

Clinical trials have begun - led by Professor Kate Bushby, from the department of human genetics at the University of Newcastle upon Tyne - into ways of fooling the body into bypassing the faulty gene.

"If successful, it could lead to a sufferer’s body being able to replenish its muscles, but funding is due to run out, and Action Duchenne believes that £30 million would be needed to help find a cure," said Kate Bushby.

Carl said: "We want to end the suffering that is this muscle-wasting monster Duchenne Muscular Dystrophy.

"We want a cure as soon as possible or a treatment on the market to help us.

"Treatments are already in the pipeline, but we need £30million so the scientists can complete the mission.

"We have had enough and we need to make more people aware of this and to get the Government to act and fund more trials."

He added: "Those of us with DMT want to go to college and study, we want to work, pay our taxes and we want to contribute to society.

"Most of all we want our bodies to function to enjoy simple things in life like eating real food that has not been liquidised so it can be fed to us by tube because our throat muscles are not strong enough.

"We want to live without the fear of a bad cold turning to pneumonia and then to respiratory or heart failure. We want a better quality of life."