Robin and his daughter Alex’s , journey started back in 1994 when she was almost 5 with a promise from Dad, that he would find a cure for a wicked inherited skin blistering condition she was born with.
Sadly Robin failed and Alex died when she was 19, but through this Father and Daughter and the telling of their story. Possibly the worst condition known to mankind, will be put into the History Books
This condition is called Epidermolysis Bullosa of EB for short; these children are sometimes known as the “Butterfly Babes”. In reality Alex was born without the chemical Collagen 7 in its right format, and you need this for healthy skin that does not fall off.
Robin gave up his lucrative business and started working full time on a voluntary basis for the charity DEBRA. This was try to help raise the money needed to find a cure for EB in time to save Alex’s life .
This is truly a remarkable story of a brave young girl and her ability to achieve remarkable milestones in her short life. And also about her Father and his remarkable achievements in the people he influenced, and the money he raised.
Robin is determined that this truly, almost unbelievable journey will be turned into a feature
The Alexandra Research Foundation owns the rights to the book and the future film and the profits from both will cure EB Worldwide.