A SCHOOLGIRL suffering from a rare bone disorder which affects just one in two million people is closing in on life-lengthening treatment – but now needs the support of town residents.
Jasmine Sanderson was just 19 months old when she was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a condition which causes bones to grow over tendons, ligaments, joints and muscles around the body.
Now five-years old, Jasmine appears to be like any other little girl – but the growths can affect her at any point and even lock into place.
The devastating illness means victims have an average life expectancy of just 41, but sufferers were given hope when medics revealed they may be just two years away from a clinical drugs trial.
A generous millionaire businessman pumped more than £200,000 into research, but £120,000 is now required by February next year to continue the promising research.
The loving parents of Jasmine, Kelly, 33, and welder Ian, 37, set up a website to raise awareness of the condition and are now set for a year of fundraising.
They are in regular contact with the families of sufferers throughout the country and are set for a meeting with them this weekend to discuss raising awareness of the condition.
The couple, who are also parents to Sienna, seven, who like Jasmine is a pupil at St John Vianney RC Primary School, spoke of their desperation to find the money in the next 12 months.
“It is a lot, and we realise that,” said Kelly, a full-time childminder.
“The most that has been raised in one year before now is £36,000 so it is asking a lot but we need to try and hopefully people will support it.”
The condition is progressive and could affect Jasmine’s full body in the years to come.
It prevents her from putting her arms above her head and she is unable to dress herself.
Lumps begin to occur every four months and can also develop if Jasmine has the flu or bumps herself.
Kelly has the future of her own daughter and fellow young FOP sufferers in mind as she attempts to raise awareness of the condition.
Due to the rarity of FOP, Jasmine had to undergo numerous tests as a baby before they discovered exactly what it was she was suffering with.
Kelly and Ian noticed she was born with deformed big toes, an early sign of the condition which wasn’t known to doctors at the time.
At one point medics even told Kelly and Ian they thought Jasmine had cancer.
“If we can raise awareness then doctors will be able to diagnose earlier,” added Kelly.
“The work they have done at Oxford University is fantastic and we don’t want that to go to waste.”
For more information about the condition or to support Jasmine visit www.fopaction.co.uk .
Alternatively call Kelly on 07989531914.