Reprinted from the 18th August 2006 edition of The Courier
The mother of Montrose "butterfly girl" Adana Forsyth was given double reason to be cheerful yesterday when it emerged that scientists in Dundee were on the brink of finding a cure for the horrific condition which makes her daughter's skin fall off.
News of the breakthrough reached Dianne Forsyth as she helped put the finishing touches to a new charity shop in the Angus town aimed at boosting the essential research fund. Following a miserable few months of helplessly watching her daughter's condition deteriorate, it was positive news. She said, "This is absolutely fantastic. The severity of Adana's condition is soul destroying. I've always tried to keep positive that a cure will be found in time for her, but recently I've been panicking."
Eight-year-old Adana was born with a most severe form of the skin condition, epidermolysis bullosa, currently incurable. She is one of 350 sufferers in Scotland of the extremely painful genetic disorder, which causes her skin and internal linings to blister, bleed and peel at the least touch. They are known as the butterfly children because their skin is likened to the fragile membrane of the insect's wing.
Scientists at Dundee University have been feverishly working towards a cure for some time now. The charity which funds research is DEBRA and yesterday director for Scotland Robin Hood was delighted to report progress. He said, "The scientists have identified 14 of the genes responsible for the condition. "They can cure EB in mice now and I am confident they will be staring clinical trials on humans within two years...
The situation changes weekly and you never know when there will be another dramatic leap forward. "DEBRA has committed £1.1 million for the research at Dundee over the next three years and it is essential we keep up that funding."
Adana's plight has touched the hearts of people up and down the country. She spearheaded a national TV appeal for research
funding when she was shown having her blisters burst and her body bandaged by her mother in what is a daily ritual.
Inspired by her bravery, DEBRA Scottish area shops manager Corinne Banks jumped at the chance to make Montrose the site for the
charity's 17th shop in Scotland. She said, "My husband Brian worked on the new Montrose bridge with which she was closely
connected through the main contractors." Bridge builders Balfour Beatty raised thousands of pounds for DEBRA during
construction of the bridge. Dianne herself, her family and a myriad of local supporters have also raised thousands of pounds and the new charity shop she hopes will considerably boost that effort.
DIANNE SAID, "A lot of people just don't know what to do to help. Now every time they come in here they know they will be helping... It has been a very difficult time. Adana is now totally confined to her wheelchair, she is anaemic, it's a struggle getting her the right nutrition, and we've been up and down to Great Ormond Street hospital in London this summer. You see the pain in her eyes, and it's all the more heartbreaking now when she is also finding the condition psychologically stressful. But she is back at school today, bright and happy to be back with her classmates. It's her spirit and the wonderful support of the good folk in Montrose that keeps me going."
The DEBRA charity shop at the junction of Montrose High Street with Murray Street opens on Monday.
25 Nov 2008: Sadly Adana passed away on Saturday evening with her family at her side. She would have been eleven years old in January.
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