Butterfly girl losing her fight for life

May 25 2008 By Steve Dinneen

A CAMPAIGNING teenager who has a condition that makes her skin blister at the slightest touch is losing her fight for life.

But Alex Hood, 19, said: "I'm ready to go where there isn't any pain - now it's up to you to carry on my fight."

Alex, who was born in Dumfries, suffes from epidermolysis bullosa - a condition causing agonising pain and the smallest knock can leave her permanently scarred.

Young sufferers are called "butterfly children" because their skin is as delicate as an insect's wing.

Alex's mum Virginia, 48, a nurse, spends eight hours a day changing her bandages.

The condition also leaves sufferers prone to skin cancer. Alex was diagnosed with cancer for the third time on February 5 - her 19th birthday.

Now medics cannot keep up with the disease, which has spread to her blood and spine, and think she will die within six months.

Dad Robin, 51, vowed to take inspiration from his "incredible little girl".

He said: "I called to say happy birthday and she said, 'I don't want you to worry but I've got bad news'.

"I broke down but Alex calmly said, 'I don't want you to talk about it daddy - please just sing happy birthday to me'. I had promised to find her a cure and felt I had let her down.

"She said I hadn't and I needed to be strong for the thousands of other children who need help.

"She believes in God and thinks me and her were put on this earth to get rid of this disease."

Alex, who has an older brother, Robin, 27, is being cared for in St Thomas' Hospital, in Warwickshire, but will go home this week.

Dad Robin added: "Alex helped plan what happens when she dies - she wants to be cremated and her ashes scattered on Loch Ken in the Galloway Hills, near where she was born.

"But she'll never really be gone because she'll still be inspiring other people.

"This disease will take my daughter and I lost my marriage through it because I spent all my time raising funds - but one day I'm sure I'll help beat it."

A spokesman for charity DEBRA - which works to help sufferers of the disease - said: "Robin's dedication and personal commitment are great assets to the organisation."

'Alex will never really be gone... she'll still be insipiring others' Dad Robin

MAILFILE

AROUND 5000 people suffer from EB in the UK.

Gene therapy at the research centre in Dundee to "switch off" the disease has been successful in mice - but a human equivalent is several years away.

Since joining EB charity DEBRA in 1994, Robin has increased funding from £90,000 a year to more than £8million.

Visit www.debra.org.uk to make a donation.

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