Firefighters to help ex-Stourbridge woman fighting rare genetic bone disorder

Front, l-r, Watch commander Ant Dingley, firefighters Mark Noott and Jamie Willetts. Back, l-r, crew commander Simon Griffiths, Sheryll Hadley, station commander Chris Wood and firefighter Christian ‘Max’ Warr. Buy photo: 391222M

Lucy Pratt

Sheryll Hadley with firefighter Mark Noott. Buy photo: 391223M

First published in News

BIG-HEARTED Stourbridge firefighters are among groups, businesses and individuals who have been rallying round to raise funds for research into a rare disease that threatens to cripple a former Oldswinford woman.

Lucy Pratt, aged 25, is one of just 45 people in the UK suffering from FOP(fibrodysplasia ossificans progressiva) - an incurable condition causing healthy muscles, tendons and ligaments to turn to bone - creating a second skeleton inside the victim.

Researchers, however, have been battling to find a way of slowing down the debilitating disease which could help Oxford University graduate Lucy.

But there is no government funding for research into the life-limiting condition and unless £120,000 can be raised by the end of 2012 - a post-graduate research programme at Oxford University will cease.

Lucy’s mum Sheryll and five other families affected by FOP across the UK have joined forces to form FOP Action UK to try and raise the cash.

Since February they have collected around £52,000 following successful fundraising events including a barn dance at St James Church Hall, Wollaston, a charity car wash at Brierley Hill Fire Station and a curry evening at Wollaston’s Red Forte Restaurant.

Gutsy friends have also staged action-packed challenges including a charity bike ride from Land’s End to John O’Groats and a climb up Mount Snowdon in Wales.

Now firefighters at Stourbridge Fire Station are gearing up for a charity head shave and chest wax to help pull in the pounds.

Firefighter Jamie Willetts said: “When Sheryll told me about the charity I said I’d do whatever I could to help.”

Sheryll, aged 55, said: “They’re so lovely. It makes you feel blessed to know such people. Every time they get a call they face risking their lives and at the drop of a hat they’ll step forward and help people.”

Brave Lucy, now based in London, faces a daily struggle against the degenerative genetic disease which has restricted her arm and back movements and her jaw.

But she remains “incredibly positive” according to Sheryll, chairman of FOP Action UK, who says good progress has been made by scientists researching the condition and clinical trials could be just two to three years away.

Campaigners, however, must raise £120,000 by December to fund a further year’s worth of research which could also lead to better treatment for people with post operative bone growth, chronic anaemia and osteoporosis.

Sheryll added: “There has been an awful lot of events going on which is fantastic but with just a handful of families trying to raise £120,000 we are still up against it.”

Other fundraisers lined-up so far include a fancy dress disco at Stourbridge Royal British Legion in Enville Street, this Friday (September 21) at 8.30pm and a disco at Brierley Hill’s David Lloyd leisure centre on November 10.

For tickets or to make a donation to FOP Action UK call Sheryll on 07954 576018 or visit website www.fopaction.co.uk

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