5-year-old battler’s struggle over
A Wellington boy fighting an undiagnosed debilitating condition that left him wheelchair bound in a matter of months has died.
Five-year-old James Swan died yesterday morning, according to a Facebook page about his heartbreaking struggle.
The page said he “died peacefully at home in his mother’s arms” and that the family requested privacy.
James had been receiving palliative care at home and his mother, Nicola, set up a second Givealittle page in April to help them raise money so they could spend the precious time they had left with him at home and to pay for funeral and counselling expenses.
In the past year the young battler’s life-limiting neurological condition rapidly deteriorated, leaving him unable to walk, stand, talk, eat, move his bowels or even swallow saliva.
His symptoms left medical professionals around the world baffled and the closest he got to a diagnosis was that he was like an adult who had a motor neurone disease mixed with a child with SMA (spinal muscular atrophy).
Last November his mother told the Herald she and her husband, Graeme, were watching their youngest son’s body shut down and there was nothing they could do.
She said at the time that they had been warned it could be James’ last Christmas as the condition also affected his autonomic system — part of the nervous system that regulates bodily functions.
Yet in spite of it all, she said, James, who has two older brothers, Oliver, 7, and Marcus, 9, had remained upbeat and took everything in his stride.
“He lights up the hospital room. He’s got such a horrible condition and they can basically see him dying in front of them, yet he continues to smile through everything,” she said.
“He does not scream when he has procedures, he just carries on like this is completely normal.”
After the Herald article, the family raised $50,000 through Givealittle to help James complete his bucket list. Anyone wanting to donate to the family can do so at givealittle.co.nz