A MAN with a terminal muscle-wasting disease is taking part in a Downing Street protest to push for better funding for research into the condition.

Carl Tilson, 21, has Duchenne Muscular Dystrophy, a genetic condition which has left him wheelchair bound, and needing round-the-clock care.

His parents, Fred, 60, and Linda, 62, care for their son at their Levenshulme home and he has to be fed through a tube into his stomach, has to breathe through a ventilator at night, and needs steroids and heart medication.

Carl's father Fred is the son of Fred Tilson, who scored the winning goals for Manchester City against Portsmouth in the 1934 FA Cup final. He says his father was a hero to many people, but says Carl's fight against Duchenne has made him more of a hero.

Carl, who was today taking part in the Action Duchenne protest to call on the Government to spend £30m on researching the condition, said: "I have been living with Duchenne for 20 years and now it has got to the stage where I am paralysed and can't walk or even feed myself. Everything has to be done for me. Many of my Duchenne friends have died.

"The worst thing is living with this death sentence on my head. They have made great strides in medical research but lack of government funding for clinical trials is holding back a cure or treatment.

"I want to say to Gordon Brown that I was pleased to hear you say you would do everything to help us but is £30m too much to ask? Is there anything more important to your government than saving young people's lives?

"We don't want to be a burden on our parents and we don't want handouts. We want to go to college, we want to work and we want contribute to society. Most of all we want our bodies to function to enjoy simple things like eating real food that has not been liquidised.

"We want to live without the fear of a bad cold turning to pneumonia and then to respiratory or heart failure. Give the research teams and clinicians the money to get on with the job of finding a cure."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.

The gene that causes Duchenne was discovered in 1986 but campaigners say since then the Government has provided only £2.2m of funding for research and clinical trials for treatments and a cure.Action Duchenne also want to increase the number of specialist centres for research into the condition, ensure all people living with Duchenne are given immediate access to new treatments and support within 50 miles of their home.

Nick Catlin, CEO of Action Duchenne said: "We have made a good start at raising awareness and funding for critical research. However, we need to do more and we need government support and funding. The young people with Duchenne don't have time on their side, we need this research to start as soon as possible so that it can really make a difference."

Carl has already raised £3,000 for research projects, to support him see: http://petitions.pm.gov.uk:80/breakthechain