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Friends raise funds to send Shane Edwards and his family on holiday
FRIENDS of a dad, who suffers from an incredibly rare degenerative disease, are showing their support by raising cash for him and his family to enjoy a much-needed break.
Emma Filmer, 37, and Paula Parsons, 32, are taking part in a series of sporting challenges to raise money to allow Shane Edwards and his young family to take the holiday of a lifetime before he becomes too unwell to travel.
Shane, of Cuckoo Close, North Waltham, was told just five years ago that he was suffering from a degenerative muscle disease.
The condition, which is very closely related to Oculopharyngeal Muscular Dystro-phy, means that Shane’s muscles, including those surrounding his lungs, eyes and throat, are getting progressively weaker.
Shane ran a successful carpentry business before his deteriorating health made it impossible for him to continue and he was forced to retire last year. The 37-year-old and his wife Sarah, 36, were childhood sweethearts and have been together since the age of 14.
They have had to come to terms with living with his illness, which was symptomless until five years ago. The couple have two children, Owen, nine, and five-year-old Ollie.
Sarah, a childminder, said: “It has been very difficult as he’s gone from being very active to having to stay at home.
“The boys know that he is ill but, because we don’t know much about the condition ourselves, we haven’t been able to tell them what it means.”
Their friends Emma, from Beggarwood, and Paula, from Winklebury, are raising money to send the family on holiday to Disneyland Paris, if Shane is able to go, or for a break in the UK if he is not.
They have already run in the Basingstoke half-marathon, the Great South Run, and arranged their own 20-mile run along with 23 other members of their running club, Chineham Park Running Club, above, between Down Grange and Hannington in January.
Sarah said: “We are really grateful for what Emma and Paula are doing.
“We went along to the 20-mile run and it was quite overwhelming to see how many people, who don’t even know us, were giving up their weekend to run in the freezing cold to help us.”
The pair are currently in training for their first-ever marathon in Brighton in April.
To make a donation visit charity giving.co.uk/emmafilmer.