Five-year-old Edward Ackroyd is looking forward to Christmas, but his future is not so certain. He suffers from Duchenne Muscular Dystrophy (DMD) which will slowly lead to him being wheelchair bound from the age of 10 and may not live beyond his teens. His mother Heidi reveals the family's battle to raise awareness of the disease and raise funds for research.

By Gabrielle Fagan.

Just like millions of other children across the country, five-year-old Edward Ackroyd is excitedly preparing for his school's Christmas pageant.

He will walk on stage dressed as a snowman and sing a song, but as his mother Heidy watches him, her overwhelming pride and joy will be tinged with a deep sadness.

She knows that her beautiful blond-haired, blue-eyed son is gradually losing the ability to walk, will be confined to a wheelchair by the time he is 10 and even worse, is unlikely to live beyond his teens.

He's one of around 2,500 sufferers in the UK - mainly boys - of a little recognised disease, Duchenne Muscular Dystrophy.

Two to three boys are born with this muscle wasting condition each week. Sufferers are usually diagnosed by the age of five and rarely live beyond the age of 20.

Around 100 people die from the condition every year as it eventually leads to paralysis. Those with the condition may also have learning or behavioural problems such as autism or dyslexia.

Heidy, 36, and her husband Paul, 40, a solicitor, live with Edward and their two other sons, seven-year-old Samuel and three-year-old Thomas, in a picture-book country cottage looking out over fields in Saddleworth, Lancashire.

But their apparent tranquillity was shattered when they received the devastating news of their son's condition 18 months ago.

"We were worried because Edward had balance problems and his speech and social development didn't seem to be progressing. He was referred to hospital for tests," Heidy says.

"But nothing prepares you to hear a diagnosis like that. We, like most people, had never heard of the disease and suddenly we were being told that our son would die from it.

"It's like suffering a bereavement of all your hopes and dreams for your child as well as facing up to losing him. We've had many tears."

But instead of being broken by grief and despair, this courageous couple are determined to highlight their little boy's plight to gain help for all Duchenne sufferers.

Although there are 40,000 sufferers worldwide, Heidy says they were "horrified to discover that this is a neglected 'Cinderella' condition that has little public recognition and inadequate research funding.

"Yet there are promising projects which could spell hope for Edward and other boys like him but they are being frustrated due to lack of funding."

So with help from friends the 'Say Hello To Edward' campaign was born.

It's already attracted support from Sir Michael Parkinson, Sir Richard Branson and impresario Bill Kenwright.

A song - composed about Edward called 'Never Say Goodbye' and accompanied by a video of the family - launches on December 8. It can be downloaded from the website,

As well as raising funds for the parent-run charity Action Duchenne, it's hoped the song could become a chart hit and improve public recognition of the condition.

"Watching Edward in school activities like the pageant is wonderful but so poignant for us because we know as time goes by his ability to take part is cruelly going to be limited," Heidy says, blinking back the tears.

"Yet he's such a cute little boy, whose sweet-natured personality shines through his problems. He loves school and although he can't be allowed in the playground as he falls such a lot there's a special area reserved for him.

"What's so touching is that he's so popular with the other children that they queue to take turns to play with him in that area."

In 30% of cases the condition's caused by a genetic mutation but in 70% of cases the mother is the carrier of the Duchenne gene. The latter's the case for Heidy but her other two sons are unaffected.

Edward receives the only current treatment - steroids - and his parents carry out daily physiotherapy with him.

"What's so hard is that Edward is slowly becoming aware that he's different," Heidy says.

"He's starting to ask why he can't run like his brothers, and why his legs hurt all the time.

"I dread the day, when he's older, and he asks me if he will end up in a wheelchair or if he is going to die. What mother wants to answer 'yes' to both those questions?"

This Christmas she's had to dash Edward's dream of getting a new bike from Father Christmas like his brothers, but she's pledged to try to make her own wish for him come true.

"Edward can't have a bike because his muscles are too weak for him to pedal or balance. We've promised him another big treat instead.

"But my dream is that although any research we help to fund with our campaign may be too late to save his damaged legs, it may bring more hope in the future for him and other boys like him.

"This is a race against time because these boys don't have years to wait. They need hope and help now."

Nick Catlin, chief executive of Action Duchenne, has first-hand experience of the condition as his own son is a sufferer.

"We welcome this innovative campaign to raise much needed money and awareness of this neglected condition," he says.

"Proper Government funding could fund research to lead to a cure, yet largely we have to rely on funds raised through charity. The structure of the faulty gene was discovered in 1986 but the potential of that has not been exploited fully because of lack of money."

The charity is currently funding a £200,000 research project into stem cell research. Duchenne is caused by a mutation of the dystrophin gene that carries information for the protein dystrophin needed for the muscle cells.

Catlin also points out that there are only two specialist treatment centres in the UK (Newcastle and London), which means a variable quality of care for sufferers.

"It's a postcode lottery of care which we believe impacts on the length of survival rates," he says.

"Some families struggle with the expense and difficulty of travelling to those designated centres, but for the majority it's impossible.

"Yet in Denmark, where there's specialised medical care centres, the survival rate of sufferers is well into the 30s and 40s compared with ours which has only recently climbed to around 20."

:: The 'Say Hello to Edward' campaign is to raise awareness and funds for the charity Action Duchenne.

A new song 'Never Say Goodbye', accompanied by a music video, is available to download (payment by debit or credit card) from Monday December 8 on

:: To find out more about DMD visit