Dear everyone,
We have not looked at this website since last December and you can be assured that returning to it today has been very hard. Indeed, the last entry recorded there was intended to be final and the intention was to eventually close down the website completely. Well, as you can see, that never happened. Somehow, we just couldn’t bring ourselves to do it. To us it felt like a betrayal to Steven and his memory to remove this blog and its testimonial from the ether.
This had been fairly indicative of how things have been this past year. Although Steven is gone forever, he continues to written into everything and every aspect of our lives. Literally everything reminds us of him and the things he said and did throughout his life. Steven continues to be all around us. Of course, we can only use our imaginations to guess his reactions to all that has happened to us and in life since his departure. Such is the measure of all that we and he lost – all of his life and living that we all should have shared with him – how much we all had to look forward to and how wonderful that experience would have been. So, as painful as some memories and such thoughts may be, they are inevitable and cannot be avoided, nor would we want to avoid them because, like erasing the blog, that would be the biggest betrayal of all.
Throughout the past year, so many of you have commented upon how well we have handled everything we have been through. I guess there may be some small truth in this perception; however, it has to be said that our appearing generally ‘upbeat’ has been more about self-preservation than anything else and seems to be the only way we can contain our huge loss. I know that people mean well when they want to talk about and share grief and sadness, and that some bereaved individuals may find relief in this: for others it just increases the misery. I think we fall into the latter category. We have no problem in talking of Steven and his life but it is impossible to dwell on last year and those awful autumn months. Certainly to talk about this part of his life’s experience is still impossible.
How best to commemorate Steven has occupied a lot of our reflections this year. We have tried hard to think of what he would choose if the choice were his. I remember on one occasion when he was ‘really ill’ in St. Louis, he mentioned that for his MSc dissertation he had already decided that he was going to study the inequity of the availability of drugs and medical services and the unrelenting cost of drugs charged to health services by pharmaceutical companies. Always a fighter and one for justice and fairness was Steven!
Thinking along these lines, we have decided to set up an association such as an ASBL (abbreviation for Association Sans But Lucratif - in English this means a non-profit making association) in Steven’s name. There are so many people (many of them very young) who have to experience stem cell or bone marrow transplants and endure all of the suffering that this entails. I felt so often, while secreted away in that bone marrow transplant unit in St. Louis, that there is such a feeling of isolation and of being deprived of all of the normal things in life – even when the patient is experiencing a period of feeling quite well and capable. It really is an environment of isolation, sanitization and deprivation – that’s the reality despite the best efforts and highest standards of medical care. Anything that can be done to improve the lot and the chances of survival of young people in this situation has got to be a worthy cause.
We have yet to finalise the details of how this organisation will operate and what specific charities it might support. We had hoped to have this in place by the first anniversary of Steven’s death, but logistically that has just not been possible. As soon as things are properly formalised, we will inform all who are interested via e mail and update this website accordingly. There may even be a brand new website in the offing.
When Steven passed away, it felt like a part of our life had been irretrievably extinguished and nothing will ever compensate for this. However, with hope in our hearts and Steven always on our minds, we hope that this initiative will commemorate Steven and keep his memory strong and alive for all those who knew and loved him.
With love to all our family and friends,
Evelyn, Matthew and Feargal
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.