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.
