In 2004, at the age of 21, Steven had just completed his university degree in economics and politics. He decided to take a gap year to reflect on further study and future career options. In January '05 Steven went to have a general physical examination in a Bangkok hospital. Surprisingly, a routine blood test showed that he was extremely anaemic. A bone marrow aspiration indicated a diagnosis of bone marrow failure requiring Steven's immediate return to Europe to undergo further tests and treatment.
Back in Europe, a genetic analysis soon revealed that Steven had Fanconi anaemia - one of the rarest congenital disorders which afflicts an estimated 3 per million of the general population. Normally, Fanconi anemia sufferers are diagnosed at birth or during childhood as they exhibit an array of physical abnormalities and medical problems. Steven displayed none of these and actually had experienced a life of exceptional good health.
In the case of Fanconi anaemia, although a stem cell or bone marrow transplant is the only effective cure for the bone marrow failure, it is generally poorly tolerated. A near perfect match between donor and recipient marrow is crucial. Feargal, Steven’s brother and only sibling, was only a 50% tissue match and no matched donor could be found on the extensive international bone marrow registries. Steven had his transplant at the Hôpital St. Louis in Paris, the most specialized centre for Fanconi anaemia in Europe, on 28th June, ‘07. The stem cells he received in his transplant had been derived from cord blood collected at two separate births.
On the 28th November, 2007, at age 24, Steven passed away in hospital in Paris as a result of severe graft versus host disease following his transplant. You can read more of his story at: