Darren’s determined to live life to the full
 But when he was nine, someone blurted out the word that is never supposed to be used about or around children with life-limiting conditions — terminal.
Doctors didn’t know
In a strange way it was almost a blessing. Darren, not really old enough to understand, just shrugged it off and over time grew used to the idea that doctors didn’t know how long he would live.
“It was devastating when we were told,” says Helen, from Carntyne in Glasgow.
“I was shocked to hear I was a carrier of this condition that I had never heard of, a condition that I couldn’t even pronounce.
“Darren’s brother Michael was just one and he had to be tested too. It was eight weeks before his results came back and it seemed to take forever.”
Thankfully, Michael was free of the illness but the family had to come to terms with the news that Darren would be in a wheelchair by the age of nine and his life expectancy might be short after that.
When he was 10, doctors said he would hopefully have another five years, now he might have five more. The truth is no-one really knows.
In the meantime, Darren doesn’t spend his days moping around, worrying about how long he has left. He knows that would soon drive him crazy.
“I’m just trying to get as much out of life as possible,” he says. “Anyone could get hit by a bus tomorrow so there’s no point in crying about how I am going to die.
“I want to go to college to study computer graphics so that I can get a job and do something with however long I have rather than sit around the house.”
Unfortunately, now that he has finished school, home is where Darren has to spend most of his time, especially in winter when he has to be very careful not to pick up colds or flu.
Duchennes means he is highly susceptible to pneumonia but, thankfully, so far he has avoided it.
A bit shy
The only real break Darren gets from his routine are his regular visits to Rachel House in Kinross. “I was a bit shy when I first went there when I was 11,” he says. “In fact I hated it at first, but that didn’t last long. As soon as I got to know the staff I loved the place.”
He loves it so much that when manageress Esther Thomson of the local Anvil Bar and her regulars recently raised £1200 to send Darren on holiday, he knew a better use for the money.
Getting away is very difficult for him because of his wheelchair and he would rather not go.
Instead, he suggested that the money go to Rachel House and everyone at the pub was happy with that.
“I now know almost everyone at Rachel House and a lot of my pals from school go,” says Darren. “It’s good to be able to talk to people of your own age who understand what you are going through.
“We talk about operations we’ve had or that the others are going to have. We swap horror stories!” he laughs.
In fact Darren laughs a lot. He has a very dry sense of humour and like most teenagers isn’t above telling the odd sick joke, even when it’s about his own health.
His mum still shakes her head when she remembers him watching a Burger King ad with the song line “Burn baby burn” and Darren saying she could play that at his funeral cremation.
Much as he tries to avoid thinking about death, reminders are rarely far away.
He has lost a few friends at Rachel House to illness and that is doubly difficult. Not only does he have to cope with losing a friend, it also brings his own situation sharply into focus.
There was a huge scare in July when a doctor told him he was soon to suffer respiratory failure and had between three months and a year to live. It was devastating news but thankfully the diagnosis was quickly proved wrong.
Consultants at Glasgow’s Yorkhill Hospital confirmed Darren had another five years and maybe a further five years on top of that.
Stressful
It still proved hugely stressful for the whole family. Michael didn’t go near his brother for days after being told of the initial diagnosis because he couldn’t cope with the news.
It shows yet again the effect a condition such as Darren’s has on the whole family.
It proves too that the care offered by Rachel House isn’t just about Darren getting a break — it’s about a much-needed breather for everyone.
If anyone doubts they all require it — and if anyone doubts the pressing need for the new hospice — then think about his 11-year-old sister Stephanie.
At an age when she should have little more to worry about than Robbie Williams or Westlife, Stephanie is a carer for her older brother.
She has to be the adult in her relationship with Darren and it’s hardly surprising her mum describes her as 11 going on 40.
Being looked after by your little sister and brother is difficult for Darren too.
“I get frustrated at having to rely on other people.
“Michael and Stephanie have to do the smallest things for me and that’s not easy to deal with. I also hate it when anyone uses the word ‘babysit’ when they have to look after me. I know it’s just a word but it’s very annoying.”
Self respect
When we think of children and young adults in Darren’s situation it is easy to wax lyrical about their courage and determination — and there is no doubt Darren has stacks of both.
But we should also remember how much self-respect, patience and humour they require to cope with the loss of physical ability and social freedom.
When we talked about his need to avoid colds and the like, Darren said he’d been lucky because he’d never been ill in his life.
He laughed when he realised what he’d said, but there’s a lesson there nonetheless.
If Darren has been lucky, what does that make the rest of us? |
You can e-mail us at:
hospice@sundaypost.com
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Darren with mum Helen — I’ve never been 
