She’d give anything to shout at Steven again
Mystery virus
 Gail, from Cardonald in Glasgow, was told he had a mystery virus and Steven made a full recovery. But two years later a second, more severe, stroke
led to heartbreaking news.
Gail said, “He was in Yorkhill Children’s Hospital for months after the second stroke and got progressively worse. He went blind, lost the ability to walk and talk and the whole right side of his body became paralysed.
“He was eventually diagnosed with a condition called adrenoleukodystrophy (ALD) and we were told he’d probably die within six to 12 months.
“Nothing can prepare you for news like that. You hear about people with ill children but you never think it’ll happen to you.”
That was more than three years ago and while the little fighter has defied medical opinion by almost reaching his ninth birthday, Steven’s quality of life is virtually nil.
Gail said, “It’s heartbreaking to see him like this. He can’t walk and his hearing will eventually go. He’s back on nappies and because he can’t see or speak it’s impossible to know how much he takes in.
“I don’t know if he can remember anything of his life before, or if he recognises voices. He has occasional outbursts and a little smile sometimes appears on his face. I hope he’s comfortable.
“The fact he was so healthy until he was four makes it harder to take. He was a really wild child — a typical boy, always answering back and getting up to mischief. I always seemed to be giving him a row — I’d do anything to be able to do that again.”
ALD is a life-threatening genetic disorder which only occurs in males and affects the adrenal glands and nervous system.
Severe
There are several forms. Steven has the severe childhood one, where boys develop normally until four to 10. Then their nervous system starts to deteriorate, the rate varying in each child.
Steven was diagnosed when Gail was pregnant with her second child. Doctors told her if the child was a boy there was a high chance he too would have the condition.
“That was a very worrying time,” she said, “so it was a huge relief when I gave birth to a little girl, Jessica.
“Girls don’t have ALD but can be carriers. I was sterilised last year as I can’t run the risk of having another child with the condition.
“I couldn’t put them through what Steven has gone through.
“All the females in my family have been tested to see if they carry ALD and Jessica will be tested when she’s old enough.
Heaven
“She’s only three but is very close to Steven and gets upset when he has to go into hospital. She asks questions like, ‘Will Steven go to heaven?’ and ‘Is Steven going to come home?’
“His breathing’s really bad and he’s been in hospital a few times with chest infections when it’s been touch and go.”
Gail was told about Rachel House a month after Steven was diagnosed. “I was scared to come at first,” she said. “I thought it’d be really depressing but everyone is so friendly and there’s such a positive atmosphere.
“Nothing’s too much trouble for the staff. Whenever I feel stressed out I know I can pick up the phone and there’s always someone here to talk to.”
We spoke to Gail while she was spending a week in the hospice with Steven, Jessica and her partner Craig. Our visit coincided with the Christmas party — and a visit from Santa.
“Christmas is a particularly special time for us,” said Gail. “We never know if it will be our last together as a family, so every moment is precious.
“Every family that attends Rachel House is in the same position so the staff make sure everyone has a great time. All the kids get a visit from Santa and there’s a real festive mood about the place.” |
You can e-mail us at:
hospice@sundaypost.com
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Gail smiles as Santa gives Steven a present 
