Contact UsSteven
Our profile this edition is Steven’s story as told by his friend Ian. This is a re-print of an e-mail I received this month.
Steven attained the age of 17 last April, which was a real milestone in his life, as his doctors at Great Ormond Street Hospital, Moorfields Hospital etc. had not expected him to live beyond his 16th birthday. But he has always been, and always will be, a fighter. He amazes everyone around him with his determination to survive, regardless of how many operations ( 78 to date ) and whatever pain he has to endure. Somehow he manages to keep going. He is a truly amazing human being.
Until I met Steven 5 years ago, I hadn't heard of XP, and was taken aback when I learned, and saw for myself what the illness can do to a person. We have been best friends since our first meeting.
He has recently had what was left of both his ears amputated. He has cancer in both his eyes. He's had some extremely big tumours removed. Never before have I personally seen an illness literally eating someone. We were on a train one day and a passenger asked me when the fire was that Steven had been in. That may give you some slight indication of how he looks. But Steven turned to the passenger as calm as you like and said "It wasn't a fire, It's Cancer"
Steven was recently more poorly than he has ever been. He was in hospital for three months, and we all thought, including him, that he was going to die. Between 5 of us we stayed with him all the time he was there. As a result we all contracted Scabies. It was bad enough for those around him, but for Steven it was hell on earth. It was so bad the hospital had the Crash Team on stand-by to try to revive him if necessary.
But he has come through it all. How on earth he finds the strength to continue his fight is really quite incredible, but he does, and he always comes through things having retained a really wicked sense of humour.
No one knows now just how long Steven will be with us for. Everyday that passes is a wonderful bonus for both him and those who are fortunate to be in his company.
The way he looks makes some people feel physically sick, in school he has been described by some children as looking like a monster. But those blinkered people haven't taken the time to look beyond his physical appearance to see Steven as he really is. A kind, considerate, loving human being, with more heart and thought for others than any other 17 year old I've met (he was the same when I first met him).
To think that there are potentially many other people just like Steven, is both sad and wonderful. Sad, because they have this terrible illness, but wonderful, because if the world was full of people who thought and felt and gave so much just like Steven does, then the world would be amuch better place.
I only wish that Steven's life could be fuller and more enjoyable, but the XP is not that kind to him. We are constantly trying to find things for him to do in order to give him something to get up for each day. He has to have something ahead of him to look forward to. It is a constant battle to stop him turning his head towards the wall and wishing the world would stop so that he could get off.
For all that life has taken away from Steven, it has also given him so much in other ways.
In memorian Steven
Steven attained the age of 17 last April, which was a real milestone in his life, as his doctors at Great Ormond Street Hospital, Moorfields Hospital etc. had not expected him to live beyond his 16th birthday. But he has always been, and always will be, a fighter. He amazes everyone around him with his determination to survive, regardless of how many operations ( 78 to date ) and whatever pain he has to endure. Somehow he manages to keep going. He is a truly amazing human being.
Until I met Steven 5 years ago, I hadn't heard of XP, and was taken aback when I learned, and saw for myself what the illness can do to a person. We have been best friends since our first meeting.
He has recently had what was left of both his ears amputated. He has cancer in both his eyes. He's had some extremely big tumours removed. Never before have I personally seen an illness literally eating someone. We were on a train one day and a passenger asked me when the fire was that Steven had been in. That may give you some slight indication of how he looks. But Steven turned to the passenger as calm as you like and said "It wasn't a fire, It's Cancer"
Steven was recently more poorly than he has ever been. He was in hospital for three months, and we all thought, including him, that he was going to die. Between 5 of us we stayed with him all the time he was there. As a result we all contracted Scabies. It was bad enough for those around him, but for Steven it was hell on earth. It was so bad the hospital had the Crash Team on stand-by to try to revive him if necessary.
But he has come through it all. How on earth he finds the strength to continue his fight is really quite incredible, but he does, and he always comes through things having retained a really wicked sense of humour.
No one knows now just how long Steven will be with us for. Everyday that passes is a wonderful bonus for both him and those who are fortunate to be in his company.
The way he looks makes some people feel physically sick, in school he has been described by some children as looking like a monster. But those blinkered people haven't taken the time to look beyond his physical appearance to see Steven as he really is. A kind, considerate, loving human being, with more heart and thought for others than any other 17 year old I've met (he was the same when I first met him).
To think that there are potentially many other people just like Steven, is both sad and wonderful. Sad, because they have this terrible illness, but wonderful, because if the world was full of people who thought and felt and gave so much just like Steven does, then the world would be amuch better place.
I only wish that Steven's life could be fuller and more enjoyable, but the XP is not that kind to him. We are constantly trying to find things for him to do in order to give him something to get up for each day. He has to have something ahead of him to look forward to. It is a constant battle to stop him turning his head towards the wall and wishing the world would stop so that he could get off.
For all that life has taken away from Steven, it has also given him so much in other ways.
In memorian Steven
posted by XP Support Group at 3:27 am
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Jeans for Genes 2006
