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Edward’s fight gets ministers vote

9/ 7/2008

THE family of a four-year-old Denshaw boy who has a rare muscle-wasting disease have taken their battle to find a cure to Downing Street.

Edward Ackroyd was diagnosed with Duchenne Muscular Dystrophy (DMD) in May last year. The condition leads to paralysis and early death from respiratory or heart failure, with survival beyond teenage years is rare.

Since then his parents Paul and Heidy, and grandparents Tony and Susan, have campaigned on behalf of Action Duchenne, a national charity striving to find a cure for the killer disease.

The Advertiser has pledged its support to the Ackroyds and to Leah Crawford, a five-year-old girl from Hollinwood who also has the terrible condition.

Edward’s family were part of a 200-plus group of children, parents and supporters who marched on Downing Street to demand £30m for research and new UK centres of excellence for DMD.

Health minister Ivan Lewis met families and MPs started a new Early Day Motion calling for financial support.  The Ackroyds also met Oldham MP Phil Woolas, who pledged his support and said there are a growing number of MPs backing the charity.

Mr Ackroyd said: "Phil Woolas said he will try to secure an audience with the Secretary of State for Health, Alan Johnson.  We are very positive about the research we are funding at Oxford University and we will need a commitment in about 18 months’ time for a clinical trial.The campaign is fantastic and one of the most difficult I have ever been involved in, but already through its work it has helped to advance research at Oxford University. As the Advertiser has been instrumental in highlighting, it is a condition which affects girls as well as boys."

The Ackroyds have so far raised about £84,000 towards their £2m target bid to fund research. The next event is a sponsored walk across Morecambe Bay on Saturday.

Visit www.justgiving.com/tonyackroyd   or www.actionduchenne.org  for further information.