Alex Hood’s memory lives on

Robin Hood taking part in the London Marathon in his daughter Alex's memory.

John Major and Cherie Blair are among those to have contributed to a charity fund in memory of a Lillington teenager who died of a rare skin condition five years ago.

Robin Hood’s daughter Alex died at the age of 19 after spending her life having to be wrapped in bandages due to being born with epidermolysis bullosa (EB), which makes the skin very fragile.

For the past 20 years, Mr Hood’s life has been shaped around his fundraising for  DEBRA, an international charity that funds research into the condition and provides support for those who have it and their families.

Last month he ran the London Marathon - wearing a sandwich board for the whole 26 miles to let spectators and other runners know about Alex’s story.

He raised £1,100 - with sponsors including Cherie Blair, Jeffery Archer and John Major - but the event was merely a tip of the iceberg of Mr Hood’s fundraising.

He was invited to attend Baroness Thatcher’s funeral because he had been acquainted with her through her support of DEBRA, having last seen her at a fundraising ball for the charity in 2007, where the former prime minister had been the guest of honour.

He said: “The funeral was very emotional. At the reception afterwards, I spoke to David Cameron about Alex and to Boris Johnson, both of whom said they would support my cause.

“I also met Shirley Bassey and have since written to her asking if she could help.”

As well as working as DEBRA’s international fundraising, Mr Hood is now also acting chairman of the charity.

He said: “In the 20 years I have been working for DEBRA, its staff numbers have grown from five to 300 and its income has gone from £90,000 to £10 million. It now has a dedicated nursing and welfare team and support for families affected by EB has never been greater.

“Researchers are now talking about finding an effective treatment or even a cure within the next five to ten years.”

Stating that he is “very proud” of the fact that he has been a part of the charity’s successes, Mr Hood said: “Whereas before, the quality of life for a child with EB was at level one or two, now it can be seven, eight or even nine.

“The improvements in the quality of life since Alex was born have gone up leaps and bounds.

“I may have lost the battle with Alex but I can still win the war against EB.”

To find out more about DEBRA, visit www.debra.org