Huddersfield company's battle to help little Edward Ackroyd

Jun 26 2009 By Emma Davison

A FIRM bringing Christmas magic to shoppers has pledged to provide a special present to a charity for youngsters with a life-limiting condition.

Richard Kitchen-Dunn, chairman of Lockwood-based display specialist KD Decoratives, is backing charity Action Duchenne after hearing about five-year-old Edward Ackroyd, who has the muscle-wasting condition Duchenne Muscular Dystrophy.

The bubbly youngster was diagnosed with the DMD when he was three.

Since then, parents Paul and Heidy Ackroyd and grandparents Tony and Susan Ackroyd, have been raising cash to fund research into a cure and improve the level of care for sufferers.

The degenerative condition, which affects one in 3,500 boys but rarely afflicts girls, is caused by the absence of dystrophin, a protein needed to strengthen and repair muscles. As a result, every skeletal muscle in the body deteriorates.

It means Edward tires easily and has difficulty running, jumping and playing like other little boys his age. As he gets older, his mobility will decline and by 10 or 12 will only be able to get about in a wheelchair.

In his teenage years, he will also need 24-hour care with specialist equipment. As DMD progresses, he will have heart and breathing problems.

Life expectancy is only to the late teens or early 20s.

Researchers in the USA and the UK believe they are close to finding effective treatment, but progress is slow because of the need to build up information on genetic variations in boys with DMD and the female “carriers” to enable clinical trials to progress more quickly.

Parents of youngsters with the condition are raising funds through Action Duchenne, which has already funded several research projects.

The Ackroyds have raised more than £144,000 with events ranging from pub collections to a sponsored walk across Morecambe Bay.