 And still Stefan’s condition is a mystery. He spent two-and-a-half years in hospital after his first seizure, but neither a cause nor a treatment has been discovered.
His mum, Anne Darling, says, “Stefan’s had every test under the sun. MRIs and cat scans show how parts of his brain have been affected, and it’s got worse over the years.
“Three years ago, he had an operation to cut away a section of his brain, but it made no difference.
“There’s no other child like him — even his consultant has only ever heard of another one or two similar cases. So we don’t know what the prognosis is. But we do know his life will be limited.”
Stefan can only crawl and just say a few words. He has attended Oaklands special school for children with complex medical needs. But, naturally, he can never be left alone.
Oxygen bag
Anne has the help of a carer, and can have a nurse at night. Anne herself has been trained to resuscitate her son — with the help of his brother Josh (10) — using an oxygen bag.
The family live just five minutes from the Sick Kids hospital, and Stefan has his own “protocol” so a well-oiled emergency procedure swings into action whenever Anne calls.
But it all takes its toll on the family. Anne says, “Josh copes well, but, of course, it can be very upsetting.”
And who can imagine how she copes with it herself? That’s why Rachel House has been such a blessing.
They’ve been going for weekends a couple of times a year, and it’s helped on several levels.
“It’s given me a break, somewhere to relax,” says Anne. It’s the only place where we can all go on holiday together.
“But they also prepare Josh for the fact that his brother won’t be here for ever. And they teach him it’s OK to feel anger, or whatever emotion.
“Stefan doesn’t understand the situation, of course. But he loves being with people — and he loves the Jacuzzi!”
“I want a story”
He also loves his grandmother, Zita Macphie, from Paisley — one of his favourite phrases is, “Granny, I want a story.”
And she loves him. Which is why she decided to join our campaign to raise the money for another hospice.
Zita is a receptionist at Ian Barry Photography in Glasgow. Last year, she arranged for portraits to be taken of Stefan and Josh — it had been a bad time for Stefan and Anne had asked for the pictures as a present for her birthday.
Now Ian Barry have generously made a special offer that will allow Sunday Post readers to help make more money for the new hospice.
Special family
portrait offer
You can have a framed, laminated 5” x 7” portrait, normally
worth £60, for just £15 — and all the money will go to our
appeal.
It could be a family group, your
children or grandchildren, even a pet. You can have it done now,
or buy a voucher to give as a gift, or even use it later if
you’re expecting relations to come home from abroad.
All you have to do is phone Ian Barry
Photography on 0141 333 9055 to make an appointment. Or call in at
their studio at 20 Charing Cross Mansions, Glasgow. When you pay
Ian Barry, make the cheque payable to Sunday Post Chas Appeal.
You’ll have a treasured memento for
life — and you’ll be making life better for so many children.
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Anne and Stefan.
