A ten-year-old Keighley boy who is one of only three people in the country with a condition called Vanishing Bones Syndrome is being tested by doctors to see if they can find a cure.
Joshua Leighton, of Spencer Street, was diagnosed with the illness in August last year.
Worldwide, there are only 170 people known to be suffering from it.
Doctors at St James' Hospital in Leeds are testing a piece of his rib bone to see if they can find a cure.
Joshua's parents Sharon and Richard Leighton realised something was wrong when he started getting breathless about 18 months ago.
Tests showed that the disease has weakened his spine and created a small hole in it, and caused two of his ribs to vanish.
His mother Sharon said doctors are testing the bone to see if they can reverse his problem.
"We are aware that it is research and they might not be able to find out how to reverse the process," she said.
"If they can't do it there are a number of other things they will try, although in the end he might have to have an operation on his spine in two or three years' time."
Joshua spent months being treated at the hospital.
Doctors feared his damaged spine would break so he was put in a cast from his neck to his thighs, which stopped him moving his back.
His chest had swollen as his body filled with fluid, a common symptom of the illness.
He had to be fed intravenously for a time, then put on a fat-free diet of three thin slices of ham, three slices of bread or two spoonfuls of spaghetti for about eight weeks while he had radiotherapy to keep the fluid at bay.
Joshua, a pupil at Guardhouse School, Keighley, where his mother also works, lost a stone through the diet, and says he now hates ham.
Radiotherapy has healed the hole in his spine and he is now back on normal food but has to return to hospital every six weeks for a check-up.
Despite his condition Mrs Leighton said Joshua had shown great courage.
"He never complains," she said. "If anyone says 'how are you' he just says 'I'm fine.'"
Now Joshua has won an award given to children who show great courage.
Ann Caden, Parent Teacher Association (PTA) chairman at Guardhouse Primary, nominated him for the Keighley Holy Family School Danny Ryan awards, named after a former headteacher at the school who died.
Joshua, along with pupils Megan Presland, Ditta and Tahir Saleem and Kyle McInness, all of Keighley, each share £2,000.
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