IMAGINE being told your child could die before he is 20 years old.

That is the terrible scenario faced by a Marston mum who is tomorrow set to embark on a march with other parents for her son’s right to live.

Six-year-old Isaac White loves to dance, horse ride and ride his tricycle to school.

But the cheery youngster has been diagnosed with the muscle wasting disease Duchenne muscular dystrophy, and doctors believe it is unlikely he will live past 20.

Mother Katherine Wedell, of Marston, said at the moment Isaac “dances and plays” like any other child, but could be confined to a wheelchair within 24 months.

Now, she is backing a campaign by national charity Action Duchenne and plans to join hundreds of the charity’s supporters for tomorrow’s Race Against Time Campaign, marching to the Houses of Parliament to make their voices heard.

Ms Wedell said: “Isaac is a very happy little boy, he loves horse riding and dancing and playing.

“He’s also a very clever little boy.

“He understands there is something wrong with his muscles and that he has to do special exercises every day.

“But he is too young to understand fully what is wrong with him.”

Action Duchenne wants the Government to ring-fence £30m for research and clinical trials, and to ensure all people living with the disease have immediate access to new drugs and treatments.

The action group also wants ministers to make sure every sufferer has a Centre of Excellence, with multi-disciplinary specialist teams within 50 miles of their home, to end the “postcode lottery” for care and life expectancy.

Ms Wedell said: “Life expectancy varies massively across the UK. I think in Oxfordshire it is in the mid-20s, but in places like Wales it is as low as 18.

“We want to end this postcode lottery of Duchenne care and see better services for people with the disease.

“In Oxfordshire we do have a good quality of Duchenne care, but this money is crucial to support, maintain, and develop this quality of care.

“Experts are so close to finding a cure for muscular dystrophy. If this money is made available we could see a cure in Isaac’s lifetime.”

A Department of Health spokesman said: “The Government expects local health bodies to provide quality care and support to people with muscular dystrophy.

“It’s important that people with long term conditions get therapy that meets their individual needs.

“The Government’s pledge to allow patients to make decisions about their care will help to ensure that they get this level of quality, personalised treatment.”