Nicola Swan talks about her 4-year-old son who is slowly dying from a condition that has left doctors around the world baffled.
The family of a five-year-old boy who is dying of an undiagnosed condition have been gifted just short of $50,000 by generous donors.
Wellington parents Nicola and Graeme Swan are having to watch their son James slowly die before their eyes after he was hospitalised in July last year.
He is believed to be the only person to be suffering from a condition that remains undiagnosed, despite samples being sent for testing in Australia, the United States and the United Kingdom.
His ability to walk and climb things began to deteriorate until he could no longer walk in a straight line.
"[I] took him straight to the GP, thinking brain tumour," Nicola Swan said. "The GP said go home, pack a bag, you're going to be there for a while, be prepared for this to be a brain tumour."
James Swan, 5, of Wellington, is slowly dying from an undiagnosed condition that has left medical staff around the world baffled. Photo / Nicola Swan
It was initially thought James had Duchenne Muscular Dystrophy, but that was quickly ruled out.
He deteriorated quickly in hospital, losing 1.8kg in his first eight days due to the muscles in his stomach no longer being strong enough to do their job.
Since then James has been tube fed, he has slowly lost the ability to stand, talk, eat, do bowel movements or even swallow saliva.
Despite his rapid deterioration and terminal diagnosis, Swan said her son still remained upbeat and positive 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."
James' "bucket list" includes helicopter and hot air balloon rides and a family trip to Queenstown where they lived briefly previously, and everyday expenses for the family.
