THE family of a schoolgirl suffering with a rare bone disorder have helped to raise more cash than even before – but still aren’t even halfway to the total amount they need to continue ground breaking research.
Five-year-old Jasmine Sanderson, a pupil at St John Vianney RC Primary School, in Hartlepool, suffers with Fibrodysplasia Ossificans Progressiva (FOP), a condition which causes bones to grow over tendons, ligaments, joints and muscles.
Her family have been on a fundraising drive along with other suffers and their families in a bid to raise £120,000 by February next year.
That is the amount needed to continue vital research at Oxford University next year, which could change the lives of sufferers of FOP.
But despite their efforts the families are still less than halfway towards the amount needed.
Jasmine’s parents, Kelly, 33, and Ian, 38, have organised various events over the past months and have been supported by kind-hearted family, friends and town residents who have helped raise thousands of pounds with events they have organised.
Kelly, a child minder who lives in the King Oswy area and is also mum of seven-year-old Sienna, said: “We have now raised, with other FOP families in the UK, more than ever previously raised in the years FOP has been researched at Oxford University.
“But we are not even half way there yet if we want to keep the team and the research going next year.
“It is such a struggle with the condition being so rare and it would be such a shame to lose any of the researchers when trials for treatment at Oxford could be just two or three years away.
“The treatment would change Jasmine’s life forever and she would be able to run around without me worrying if she had any little bump.
“At the minute any bump at all can cause an explosion of a new FOP bone to grow which could restrict more of her movement.”
Kelly thanked friends who have organised recent events which have boosted the fundraising total.
Her close friend Sarah Coulson put together a fundraiser at the Cosmopolitan Hotel, on the Headland, which featured a live performance from The Hobbies.
The event raised £750 which is going to be matched by Barclays.
Kelly also said a big thank you to Michelle and Lee Bryan, whose daughter Libby is a close school friend of Jasmine.
The couple organised a raffle at the christening of their son Ellis which raised £268.
“The support we have received has been absolutely fantastic,” said Kelly. “I honestly can’t thank people enough, we are so grateful.”