AN INSPIRATIONAL couple will be spending 2011 continuing their fight to raise funds and awareness for the disease which affects their son.
Little Harry Vaughan, of Flint, was born with the rare disease muscular dystrophy merosin negative, which affects the muscles of the body and causes problems in mobility.
Harry's parents, Debbie, 41, and Kevin, 44, are trying to bring attention to the family's cause, and have raised thousands of pounds in the last year for charity.
Debbie, who gave up her job as a PA to be a full-time carer to her three-year-old son, said Harry is doing “exceptionally well” but said the fight to obtain the services that he needs is a "constant battle".
A good start to the new year was enjoyed when Sainsbury’s Flint organised a fundraiser in Harry’s honour.
Debbie said: "I thought it was really nice that they had looked locally and not just looked at the main charities.”
But troubles with equipment that vitally help Harry have caused problems for the family.
They requested a special wheelchair for Harry last June, but the long waiting list for specialised equipment has meant a delay in Harry getting the equipment he vitally needs.
“We’ve had such a nightmare with wheelchair services,” added Debbie.
“The waiting list is so long and Harry's needs will change as he gets older.
"Some parents end up going down the route where they have to purchase their own because of the problems they have.”
The Muscular Dystrophy Campaign, a national charity, which runs care centres and helps raise funds for the cause across the country, has helped the family raise money and has also assisted in the battle to get equipment for Harry.
“Because of the problems we've been having with the wheelchair services, I got to a point where I didn't know who to go to,” said Debbie.
“So I contacted the Muscular Dystrophy Campaign, asking if anyone could advise me and they've been brilliant.”
Debbie is now organising another fundraiser at the Navy Club in Connah’s Quay on Friday, March 25 where proceeds will be split between the Muscular Dystrophy Campaign and a fund set up for Harry.
She is appealing to businesses to donate raffle prizes.
Patricia Mulreay, of Sainsbury’s, Flint, said the supermarket was pleased to have played its part in supporting Harry by providing toys and other items to be raffled off.
She said: “We are keen to support local good causes and would like to thank everyone who donated toys. The family regularly shop here and we consider them to be a good cause.”
If you can help call Debbie on 07717686193.
See full story in the Leader