Lillington girl’s father releases biography about his years of fundraising in her memory

Alex, who would have been 26 last Thursday, was diagnosed with dystrophic epidermolysis bullosa (EB) shortly after she was born in 1989.

From Alex’s early childhood her father Robin has been raising money and working for DEBRA, the charity which is aiming to find a cure for EB.

And in the biography, Smile Daddy I’m Dying, Mr Hood describes his efforts and his life with Alex.

He said: “This will let people know what a remarkable daughter I had who achieved so much despite all she endured and I am proud to say that I was her Father.”

Mr Hood and Alex’s mother Virginia would spend ten hours a day wrapping bandages around their daughter, as the condition caused her to blister at the slightest touch.

But it was being involved in a car crash in 1992 that was a turning point for Mr Hood.

He said: “I was on my back for one year and felt totally depressed and demoralised. When I came back to full strength, I looked at my daughter and realised that health is the most important thing.

“I had lived a little bit of her life and it gave me a different perspective.”

Having started out by running a marathon in Scotland in 1994 while pushing five-year-old Alex in a pushchair for the whole route, Mr Hood has since taken part in hundreds of events - including the London Marathon in 2001, pulling his daughter along in a supermarket trolley, and a 50-mile event in Ireland, pulling along another little boy with EB in the same unusual fashion.

Mr Hood is now the chairman of DEBRA and has had support from the likes of Prince Charles, David Cameron and Boris Johnson during his fundraising campaign.

Speaking after he had run the 2013 London Marathon with a sandwich board promoting DEBRA attached to him, Mr Hood said: “In the 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.

“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.”

The book will be available for £7.95 from March.

For more information visit smiledaddyimdying.co.uk