Working Hard to Cure EB A skin blistering condition

Read articles about Alex, her condition, and our fundraising drive to find a cure for EB.

Working Hard to Cure EB Disease

Read articles about Alex, her condition, and our fundraising drive to find a cure for EB.

Working Hard to Cure EB Disease

Read articles about Alex, her condition, and our fundraising drive to find a cure for EB.

About Alexandra Research Foundation and Robin Hood’s Book

About the Book

Alex died on July 17th 2008 and that year Robin her Father had raised so much money despite all the trauma of watching her die, he won Fundraiser of the Year Award in Glasgow.

This was the ultimate milestone which resulted in this book being written by an accomplished writer named David Leslie. The idea was to distribute it through a
Publishing House but they take 40% of all profits.

So the Alexandra Research Foundation has been formed so that all profits from this truly remarkable story go into more research for the condition EB.

The title of the book “Smile Daddy I’m Dying” came from Alex’s words to her Father, when she was told; there was nothing that could be done to save her life, by a consultant at St Thomas’s Hospital.

Alex’s words were” Daddy I’m dying not you, smile every day for the rest of your life, and do not give up your fundraising work.”

So through the Alexandra Research Foundation and the sales of the book and promotion of the film, Robin is fulfilling the promise he made to Alex.

“Like his namesake of centuries earlier Robin Hood had sacrificed all for love. The outlaw of folklore, driven by injustice, was said to have gathered a fortune to buy the freedom of his sovereign. And the modern day man, for whom that name had once been a millstone, had raised a king’s ransom to save his own child. But while legend recorded that the first had succeeded, the second failed.

His daughter Alexandra had died after battling an illness so cruel that the Devil himself might have devised it. Apart from sleep or unconsciousness there was not a minute during the 7104 days, the 170,496 hours of her existence when she was free from agony. Not a moment when pain was all the future held. The appalling condition left its little victims with skin as tender to the touch as that of a butterfly. But now that death had given relief from her nightmare, her father could at least hug what he held of his Butterfly Child, even if that was in a little grey urn.

Until the moment when life left her, not once had he dared cuddle his daughter in the nineteen years of her agonising life in the way a father would. Even now, that simple act of holding his child was his only consolation. Because in trying to save not just her, but all the other afflicted children, he had lost his family, his home, his savings, and his livelihood. No wonder friends constantly asked whether the cost to him and those closest to him was all worth it.

And then what of the hope he had forever dangled before his child? Until his own dying day he would carry the memory of knowing that barely a week had passed when he had not told his little girl that her misery would end, not in death but with the discovery of a cure. But she had died with that promise unfulfilled, his freedom to cry being the cost of her passing. Yet he found even that simple act of grieving difficult, maybe because for most of her life he had been too busy with the business of trying to save her to find time for emotion. Now, his face was damp, but that was from raindrops which seemed to want to wash away his own pain.”

Contact us for more information on our charity and to get involved with the fundraising events we put on across the whole of the UK.