A Wellington boy fighting an undiagnosed debilitating condition which left him wheelchair bound in the matter of months has died.
James Swan, 5, died this morning, according to a Facebook page set up about his heartbreaking health struggle.
The page said the boy "died peacefully at home in his mother's arms" and that the family requested privacy. The family has received hundreds of messages of support on the page.
The young boy 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 the funeral and counselling expenses.
In the past year the young battler's debilitating life-limiting neurological condition rapidly deteriorated, leaving him unable to walk, stand, talk, eat, do bowel movements or even swallow saliva.
His symptoms left medical professionals baffled, staff around the world baffled and the closest he got to a diagnosis was that he presented like an adult who had a motor neurone disease mixed with a child who has got SMA [Spinal Muscular Atrophy].
In November last year, his mother Nicola 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 they had been warned that it could be his last Christmas as the condition also affected his autonomic system - part of the nervous system that regulates bodily functions.
Yet, despite battling with such a horrendous condition, she said her son, who has two older brothers, Oliver, 7, and Marcus, 9, had remained smiley, 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. He does not scream when he has procedures, he just carries on like this is completely normal."
Following the Herald article, the family raised $50,000 through Givealittle to help him complete his bucket list.
Anyone who wants to donate to the family can at https://givealittle.co.nz/cause/supporting-james-and-his-family