£25,000 raised so far by sister of girl whose muscles are slowly turning to bone

Her 16-year-old sister Seanie, from Ladbroke Grove, has fibrodysplasia ossificans progressiva, also known as stone man syndrome, which causes muscles, tendons and ligaments to turn to bone.

It affects only about 600 people worldwide.

There is no cure and sufferers will one day have to decide whether to sit or stand for the rest of their lives.

The only team working to find a cure or treatment is at Oxford University and they need £120,000 a year to continue the research.

Sinead and five other families affected by the disease have raised £116,000, so they are only £4,000 short of the amount needed by the end of the month.

Seanie and her family said readers who saw her plight in the Chronicle last October have been a huge help.

Her mum, Marian, said: "Thomas Jones Primary School have raised £500 through their children doing mufti days and parents and teachers collecting money at the gates in buckets.

"Plus we have had support from a local business Nu-Line in Westbourne Park Road who donated £500. I have also been made aware that other local schools are holding fundraisers as well."

The Maxilla Social Club in Notting Hill is holding a fundraising night on March 2 for Sinead's climb, which will include a DJ and raffles. The family are asking businesses to donate items to be raffled.

Friend of the family, postman Mick Murphy, raised £3,000 by growing a moustache for Movember and then having it waxed off in the Eagle pub.

He said: "I saw the article in the Chronicle and felt compelled to do something.

"It is really heartbreaking to think of the future Seanie will have if a breakthrough in the research is not found and if this research stops then there is no hope at all.

"Getting my moustache ripped out felt like a very small effort compared to what Seanie and her family go through every day."

To sponsor Sinead visit uk.virginmoneygiving.com/team/climbingforacure.