THE FAMILY of a schoolgirl who died following a life-long battle with a congenital disorder have almost raised the money for her headstone.

Schoolgirl Charley Drewett Scanlon died in January this year at the age of only 14 following complications with her congenital adrenal hyperplasia, a disease which can alter the development of sexual characteristics as a result of the excessive or deficient production of steroids in the body.

For Charley, it meant that she had to undergo numerous operations and take daily medications in order to handle the disease.

Yesterday, Charley’s grandmother Denice Scanlon along with mum Claire Eddolls and dad Jamie Scanlon and many of Charley’s friends took part in a fundraising walk dressed up in onesies around Coate Water to try to raise the money for the £4,000 headstone.

The 51-year-old from Meadowcroft said: “When Charley was born they didn’t know whether she was a boy or a girl, and she had a hole in her heart.

“She went through a lot of operations, and when she was older she had to make sure she took her medication three times a day and the doctors said that if she didn’t take her medication that she could go into a coma.

“Because of all the medication she was taking she was always getting infections “One day she came home from school and she just said she didn’t feel very well and she went to have a nap for a bit.

“Then she went to have a bath and then started to be sick.”

Charley was rushed to the Great Western Hospital where staff tried to help her body to fight the infection, but sadly she lost her fight and died on January 13.

Denice said: “There was a post mortem and the coroner said it was a respiratory viral infection in her lung and that she had had an adrenaline crisis.”

The Dorcan Academy pupil was buried in Kingsdown Crematorium, and now her family and friends want to raise money to buy a special headstone where they can leave things for her.

Denice said: “Because there isn’t a charity for what Charley had we decided instead to raise money for a headstone, so we put on a onesie run.

“There was quite a few of us there, about 50 of us.

“The younger ones ran it and the older ones walked it, and most people wore onesies and a couple wore pyjamas instead.

“We raised £600 doing the onesie run and we had already raised £1,100, but we want to be able to pay for a special headstone.

“We want one with a bit around the side where we can leave things for her, and we just hope people might come and donate and help us get it for her.

“I just think it’s something for Charley as well and we just thought a onesie run would be a good thing to do in her memory.”