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Grieving father of butterfly child Alex vows to save others

BUTTERFLY child Alex Hood was just 19 when she lost her fight with epidermolysis bullosa (EB), but now her devoted dad Robin is determined to keep her memory alive with the rollout of a new life-saving drug.

The gorgeous teenager passed away in July 2008 in Scotland, after her condition led to incurable cancer. Like more than 400 people in Ireland, she suffered from a debilitating illness which left her skin paper-thin and caused it to break at the slightest touch.

Yet the artistic youngster certainly left her mark, enjoying tea with Tony and Cherie Blair, receiving a letter from Bill Clinton, and even turning down an invitation to meet Prince Charles because his visit coincided with her plans for a birthday trip to McDonald's.

Now her dad Robin has become head of corporate fundraising at Debra Ireland, the support organisation which aims to raise funds for research into treatments and cures.

First on his agenda is to try to ensure that an Irish patient is chosen to take part in the upcoming second clinical trials of a new injection called fibroblast.

Robin told the Herald: "I felt cheated when Alex died, but by coming to Ireland and talking about Alex she's still alive in a way."

He added: "This injection is just in trials now. Had it been available a few years ago, things could have been a lot different for Alex."

The drug works by stimulating collagen 7 and boosting the skin's healing properties. And as EB patients are constantly suffering from open wounds, the injection helps the skin to recover faster and thereby protect the body from infection.

Robin explained: "Just imagine constantly having bandages, but only weeks after this injection you've got your skin back so it reduces the bandaging time."

"When you have constant re-scarring and open wounds, this encourages squamous cell carcinomas, and this is the type of cancer that killed Alex.

"She had her first tumour removed two days after her 18th birthday. She had another one removed in December 2007, and the final one was in February 2008. She was told the cancer had returned on the morning of her 19th birthday."

Recalling his daughter's distressing illness, he added: "Alex couldn't eat by mouth so she had food pumped into her stomach. Among the side effects were that the back of her throat closed up and she couldn't swallow her own saliva."

After learning of his daughter's condition, Robin began fundraising for Debra UK. However, very little was known about the plight of butterfly children and there was no money to fund research into treatment.

He later left his job and worked with the organisation without pay for six years in order to boost its profile and increase fundraising.

Despite grieving his terrible loss, Robin is determined to raise the profile of EB in Ireland and to prompt enough fundraising to ensure that treatments and ultimately a cure are found.