18 years of one day
at a time with William
By Craig Robertson
BILLY DURHAM’S advice to the man
engraving his daughter’s headstone was simple. “Leave plenty of
room.”
 Little
Stacey had died just before her third birthday, but even that
wasn’t the limit of the heartache for Billy and his wife Izzy.
They
had to endure the haunting knowledge that their new-born son,
William, was likely to follow Stacey into an early grave.
Rare
Stacey
was born with a rare genetic condition which meant her head was
extremely small and her brain retarded.
Billy
and Izzy, from Carntyne in Glasgow, were told she had Edward’s
Syndrome and that it was likely she’d die in her first year of
life.
“We
were told she’d never be able to do anything for herself,”
remembers Izzy. “She wouldn’t walk or talk. A nurse said we
should take her home and let her die with dignity. We were
devastated.”
Never improved
Sadly,
Stacey’s condition never did improve. She was always tube-fed and
had no real awareness of things around her.
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 Izzy, William and Billy, and, below, a picture of their daughter Stacey.
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Despite
the difficulties, Billy and Izzy were desperate for another baby
— but not at any cost.
They
went for genetic counselling and were assured there was a
3000-to-one chance that a new baby would suffer from the same
condition as Stacey.
“That
reassured us and we thought we’d take our chances at those
odds,” says Izzy. “After William was born, another doctor told
us he’d have put the odds at one in four.”
Izzy
was scanned for abnormalities regularly throughout her pregnancy
and was assured the baby’s head was growing in proportion to its
body.
The couple were even convinced to sign a legal paper declaring they wouldn’t take action against the hospital in the event there was a problem.
Shock
Days before she was due to give birth, doctors took Izzy aside and told her, “Prepare for a shock.”
Almost exactly two years after Stacey was born, William emerged into the world and one look was all Izzy needed to know that his condition was exactly the same. She simply couldn’t bear it.
“I couldn’t go to him for 10 days. I couldn’t even look at him. It was pure anger. I couldn’t believe this had been allowed to happen.
“Of course I also felt so guilty at not being able to hold him. I knew it wasn’t his fault, but I also knew I just couldn’t cope with two of them. If I’d known he’d have had the same condition then he’d never have been born.”
Izzy’s honesty in admitting her torn feelings remains very raw. The memories bring the anger, guilt and sadness rushing back.
Cancer
To make matters even worse, if that were possible, Billy and Izzy were not only coping with Stacey but also with Izzy’s father who was in the advanced stages of cancer. Billy, too, was fighting severe arthritis brought on by spinal TB, a condition he’d had since a football injury in his teens.
“I’d not recommend anyone to buy lucky white heather from us,” says Billy with a grim laugh.
The couple had only one option and William went into foster care for the first year of his life as they battled on through the twin traumas of coping with a dying daughter and father.
Stacey outlived the worst predictions of her life expectancy, but not by much. She died not long before her third birthday. The Durhams not only had to grieve for their daughter but fear for their son. They had been given stark proof of the finality of his condition.
Five months after Stacey’s death, Billy and Izzy got William home and began a day-by-day, week-by-week existence. Never planning ahead, never knowing how long he’d live.
William was even lighter than Stacey at birth, but he proved to be stronger and sturdier, being able to eat by himself and drink from a cup.
Seizures
He was prone to seizures and chest infections and his hearing and eyesight were severely impaired. But he was strong, a battler.
“We always lived with the thought that he could die at any time,” says Billy. “Every birthday was a milestone, a huge bonus, particularly when he reached three as Stacey hadn’t done. People wonder how we can cope with the knowledge that he might die, but you just do. You get on with it.”
The Durhams have, indeed, got on with it. Incredibly William is now 18, defying all odds and all predictions.
“The wee fella has proved the doctors wrong and now he’s proving us wrong as well,” says Billy. “We never thought we would see the day where we witnessed the transition from child to teenager to adult, but it is happening.
“He’ll never have the quality of life we’d want for him and to see your son grow up like that isn’t right. It’s not his fault and it’s not fair. However he is a contented boy and when he lies there and smiles at you, it fair makes your day.”
Heart attack
As William has grown, Billy and Izzy’s task has become ever harder. As well as his arthritis, which means Billy has to rely on crutches and a wheelchair, he has suffered a heart attack — meaning ever more of the physical burden has fallen on Izzy.
“I don’t know where I’d be without her,” Billy says. “And I don’t know where either of us would be without Rachel House.”
Izzy has no doubt the children’s hospice at Kinross has been their salvation. “Rachel House is a godsend”, she says. “It’s the only place I can completely relax if William is out of my sight. It has been a lifeline.
“He gets great care at Quarrier’s Village, but I’m always waiting for a phone call to say he’s ill. At Rachel House I can relax totally, knowing he’s fine. It’s such a great place too, not full of doom and gloom at all. Instead there’s so much laughter.
“It’s the simple things too,” says Billy, “Like being able to go out for a drink knowing he’s safe, that they know William and his condition so well. Plus you couldn’t buy a ticket for some of the laughs we’ve had there.”
Billy and Izzy will be taking William to Robin House as soon as the new hospice, built with the great help of Sunday Post readers, opens at Balloch this summer. Not only is it nearer home, but there’s the huge added advantage of a hydrotherapy pool.
That’ll be a godsend not only for William, but also Billy as it will ease his arthritis.
Change
The Durhams have no doubt William will take quickly to the new hospice as they’re sure the care team there will be every bit as good as at Rachel House. Change is something they’ve had to become used to — they have even had to adjust to a change in William’s diagnosis.
Doctors have reassessed his condition and after years of thinking he had Edward’s Syndrome, like Stacey, they now realise there are chromosome differences which convinced them he has an exceptionally rare disorder named mosaic aneuploidy. It’s thought William is one of only 11 people in the world with it. It’s likely Stacey also had the disorder.
Yet the altered diagnosis changes nothing for this remarkable couple. William’s care, the central force in Billy and Izzy’s lives, remains the same.
“He’s well in himself and has lived much longer than anyone thought, but you can’t get complacent,” says Billy. “Do you start thinking he’ll live for ever? No, you haven’t to get too far ahead of yourself. It’s been 18 years, but it’s still one day at a time.”
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You can e-mail us at:
hospice@sundaypost.com
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