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Mum Praised for 10 Years of "fatal Sunshine" Support Group
Tuesday, February 17, 2009
By Oliver Evans
Visitors from around the world with xeroderma pigmentosum came to the county for an annual camp organised by Sandra Webb.
They said her Xeroderma Pigmentosum Support Group had played a vital role in helping them understand and live with the extremely rare disorder.
About one in 250,000 people have the genetic condition, where ultraviolet light causes DNA damage which can then cause skin cancer.
If not spotted the disorder can kill before the age of ten.
Mrs Webb, of Prestwood, set up the group after discovering her son, Alex, now 14, had the condition.
About 50 people and families came to St Katherine’s, Parmoor, near Frieth for an annual weekend of activities.
Special film was placed on windows of the country house to keep out UV light and outdoor games were held during the hours of darkness.
Khalid Hussain, 48, who came from Birmingham with grandson Aweisa, nine, said: “It gives you courage that you are not on your own, that there are other people.
“He has made some new friends and he is not left alone. At school he is kept inside and one child has to sit with him.”
Cecile Fredefon, 30, from Bordeux, France, said: “It is good to know this is happening in England because it improves the patients’ experience.”
Michele Milota, from Sacremento, California, said the group and weekend was a lifeline to her daughter Aimee, six.
She runs a similar camp through her US support group XP Family Support.
Mrs Milota said: “We cite what Sandra has done as an inspiration, at first we didn’t think we would have a camp.
“It is so important for families to get together.”
She said: “Since there are less than 1,000 individuals worldwide with XP it is good to get out and reach out and meet other people.”
She said “just moments” of exposure to UV could damage her daughter’s DNA, which can cause skin cancer when it tries to repair itself.
This has meant Aimee has had to have 26 skin cancers removed, Mrs Milota said.
Mrs Webb, 51, of Strawberry Close in Prestwood, said she was touched by the tributes and pledged to keep working to raise awareness of the disorder.
It can kill before the age of ten if not detected, she said.
She said: “When we ran the first camp eight years ago there were families that had never been on holiday. They couldn’t find somewhere safe.
“This year we have had to turn families away, we are completely full.”
Mrs Webb said: “When we started we knew of one other family in the UK.
“It is of real value for me. I am not the kind of person who can sit back and wait for things to happen.”
Her son began to burn in the sun after seven weeks yet his condition was not diagnosed until he was four, she said.
He now wears a protective suit when outside and has to apply sun cream every two hours.
Princes Risborough School has installed the protective film on windows to keep him safe.
Mrs Webb said: “It gives me a great deal of pleasure to know that families are not in the position that I was in when my son was diagnosed.”
© Copyright 2001-2009 Newsquest Media Group. A Gannett Company
Source: Bucks Free Press