A ROMSEY mother has pleaded with government ministers to support the funding of a breakthrough drug that could help her seven-year-old son live longer.

Time is running out for Jagger Curtis who suffers from Duchenne muscular dystrophy which means he is unlikely to live beyond his 20s.

However, his family were given hope that a new drug on the market could help prolong and improve the quality of his life.

Jagger’s mum Jules Geary was hoping that her son would by now be on the drug Translarna after he was identified as one of only four boys in the Southampton area who suffers from this particular form of the muscle wasting disease.

But last month she discovered that funding for Translarna had not been approved by NHS England – the body which approves and pays for drugs to be prescribed on the NHS.

Jules, 39, said: “We couldn’t believe it. For the drug to work Jagger still needs to be mobile, which he is now but that is likely to change by the time he reaches eight or nine. We simply don’t have time to wait, this is a ticking time bomb for us.”

On Wednesaday Jules, her partner and Jagger’s dad, James Curtis, 42 and Jules’s dad and his partner joined a mass rally and march through London before handing in a 22,000-signature petition to Downing Street.

Jules added: “We have been lobbying MPs and putting pressure on the Government to look at this situation. This would mean a real difference to the quality of life for our son, there is no other treatment out there, this is his chance at a longer and better life.”

She took part in a lobby session with ministers which outlined how the commissioning of the drug could help scores of sufferers but that time was running out as the drug is only effective if taken whilst the patient is still mobile.

Jagger is expected to be reliant on a wheelchair by the time he is nine as the muscle wasting condition develops.

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign: “Translarna is a long-awaited breakthrough. We must see an end to the delays in this drug reaching children who desperately need it. NHS administrative delays cannot lead to a situation in which even one child becomes ineligible for a drug that could have made a profound difference to their life. We and families affected by Duchenne muscular dystrophy demanding action , for the many children who cannot afford to wait.”

A spokesman for NHS England said: “Patient groups have asked the NHS to consult with the public about priorities for new services and treatments to be funded from April, and that consultation begins next week. Meanwhile patients whose doctors say they have an urgent need for a new treatment can ask medical experts to fast track their case.”

To support the family search Jagger’s Journey on Facebook or follow @Jaggersjourney.