Dear everyone,
Matthew, Feargal and I would like to take this opportunity to express our gratitude to you all.
Many thanks to all family and friends who attended Steven’s funeral, particularly Steven’s friends who traveled from far and wide to be there. Despite the sadness of the occasion, it was comforting to see you all and spend some time with you.
Thanks for the huge number of mass cards, e mails and letters of condolence we have received. We have been overwhelmed!
Lastly, many, many thanks to all of you who followed Steven’s progress on a daily basis through this blog website. We know that you have been numerous and steadfast in your support and goodwill, and Steven was well aware of this throughout his struggle in Paris.
As this is the final message, we thought it appropriate that the eulogy from Steven’s memorial mass be included as a last farewell. (Please see below)
This website is now closed for comments and will be shut down completely before Christmas.
Love to all,
Evelyn, Matthew and Feargal
Eulogy
When Steven was born in 1983, like all first-borns, he made a dramatic difference to our lives. As parents, we were novices and about to embark on a very steep learning curve – pretty quickly, Steven made us keenly aware of his every little need and had us immediately jumping to attention.
Naturally, Steven's needs waxed and waned throughout childhood and adolescence but at no point did we ever foresee how complex, specific and challenging his needs would become into adulthood; and just how much more we had to learn from him.
This was never more apparent than when, in 2005, he was diagnosed with Fanconi anaemia, which carried the very bleak prospect of being a terminal illness. Steven, always the pragmatist, perceived his prognosis as an inconvenience to be gotten over. Instead of feeling down and perhaps embittered by the very sudden and totally unexpected identification of this awful disease, he powered on and refused to be limited or defined by his medical condition. Defiant, he resolved to continue his life and embark on all his existing plans despite the looming medical crisis that was overtaking him. Fully cognizant of the medical dangers he faced, Steven, while always open to discussing and making plans regarding his condition, would never dwell on it to the exclusion of other 'more enjoyable' events.
And boy did Steven have a penchant for enjoying life! He liked nothing better than weekends out with his mates, going on the razzle, followed by long lazy Sundays recuperating. For Steven, relaxation was an art, which once perfected had no parallel. He could spend oceans of time just pottering around his room, listening to his vast array of music, smoking and chatting with friends. Taking most things in his stride, he never exhausted himself, and aspired to being totally laid back – emotional drama was something he did not enjoy.
However, the laid back Steven was not the essential Steven. Steven was always a high achiever, fairly competitive and would not embrace failure easily. Strong in his opinions, it was impossible to sway his stubborn streak when he got dug into an idea or a stance. He was very much an independent thinker, with an ability to be absolutely direct when necessary. Injustice, blatant materialism, and pomposity all crazed him. Conversely, he valued ordinary people with ordinary lives and had a very kind and generous nature. After living in Bangkok for a short period, where he had witnessed at first hand real human inequality, on his return to Europe, he immediately embarked on an MSc in Development Studies to address what he perceived to be overwhelming global unfairness.
Steven always had an informed, refreshing and usually witty view on almost every topic. He was a mine of information on all things sporty and a true football fanatic. A real highlight of his time in Manchester was being able to go see his team Liverpool in action.
In all, this combination of Steven’s total love of life and his strong inner qualities provided him with the drive, steadfastness and clear focus to face up to the most intense and destructive of medical procedures during his stem cell transplant. Steven approached the date of his hospitalisation with a strong belief in his own powers of survival – for him defeat was not an option and this faith kept him going through the many very dark days when suffering was intense.
Heartbreakingly, Steven did not win his struggle. That Fanconi anaemia is a formidable opponent was clear from the start. Ultimately, all of our intense preparation, dedication, love and support, combined with Steven’s strong resolve and fighting spirit, could not prevent this disease from gaining the upper hand. A lifetime without Steven, we cannot even begin to imagine. Our only recourse is to be inspired by Steven’s love of life and tenacity within life. We will take Steven as our role model to heal, to hopefully embrace and enjoy life once again, as he had always intended to do. We will always love Steven and he will dwell in our hearts, thoughts and in the core of our family forever.
Welcome
Welcome to this website which has been created to record Steven’s experiences throughout his stem cell transplant. Steven is happy that this information is shared with you all and that you also have the opportunity to share your thoughts and comments with us.
The Story So Far
In 2004, at the age of 21, Steven had just completed an honours 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 cytogenetic 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. This is a genetically inherited disorder, acquired when a single recessive gene is passed onto a child from each parent. 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 bone marrow transplant is the only effective cure for the bone marrow failure, it is generally poorly tolerated. As a result, a near perfect match between donor and recipient marrow is crucial. Feargal, Steven’s only brother, is only a 50% tissue match, and to date, no matched donor has been found on the extensive international bone marrow registries. Steven is to undergo transplantation at the Hôpital St. Louis in Paris, which is the most specialized centre for Fanconi anaemia in Europe. The stem cells he will receive in his transplant have been derived from cord blood collected at two separate births. Although they are experts in cord blood procedures in Paris, this is the first time they will perform a double cord blood transplant on an adult Fanconi anaemia patient.
Steven has been very defiant in the face of his diagnosis and has made very few compromises with his medical condition. He is determined to continue his life undaunted and plans to return to complete his MSc studies in International Development in Manchester following his transplant.