A SALE family whose son suffers from a rare, life-threatening genetic disorder is helping to raise awareness of the condition through a Jeans For Genes Day.
Oliver Bedford-Gay, aged six, was born with Fibrodysplasia Ossificans Progressiva (FOP), affecting one in two million people and causing bone to form in muscles, tendons, ligaments and other connective tissues.
The average life expectancy for those with FOP is just over 40 years, with painful swellings on the neck, back and shoulders maturing into bone and sometimes disabling a child’s arm, leg or neck overnight.
Oliver’s mum Helen said: “We could see it was a devastating disorder, with little medical understanding.
“At the time, we didn’t know the magnitude of it but the nightmare became more and more apparent.”
FOP Friends of Oliver, the charity co-founded by father Chris, will receive £16,000 from funds raised on the day, an annual event established by the charity Genetic Disorders UK, inviting everyone to wear jeans for work or school in return for a donation.
The money will fund a charity support assistant as well as supporting Oxford University research into treatment of the condition.
Helen said: “We are eternally thankful that Oliver hasn’t physically been affected by FOP but we feel we are living with a ticking time bomb.
“We can’t stop him being a little boy but accidents are going to happen and my heart stops when he runs.”
Jeans For Genes day is on September 19.
Sign up for a free fundraising pack at jeansforgenesday.org.
For more information visit friendsofoliver.com.