THE illness afflicting eight-year-old Samuel Cheetham from Ashley Heath makes him one in a million.

When he was four, Samuel was diagnosed with primary pulmonary hypertension, an extremely rare and little-known type of lung disease.

Sam has to carry a device in his backpack that pumps medication into his bloodstream 24 hours a day through a line in the wall of his chest.

His condition means he can only go approximately 50 yards at a time without feeling short of breath due to the immense pressure on his heart and lungs.

Sam's family is organising a charity barn dance at Moors Valley Country Park on Saturday, May 19, two years to the day after a cream tea event at their home, attended by 150 family and friends, raised over £1,100.

The end of April was Pulmonary Hypertension Awareness Week, and campaigners believe there may be many undiagnosed cases of the condition.

Sam's mother Karen, 45, explained that 90 per cent of his classmates at St Ives First School knew him before the illness and are very protective of him: "There's a very strong community spirit in his class," she said.

She added that the upcoming event is not just about raising funds: "We're also interested in getting publicity for the illness."

Pulmonary hypertension causes the arteries of the lungs to harden, making the heart work that much harder to pump oxygenated blood around the body and eventually causing the lungs to fail completely.

A support group for sufferers of pulmonary hypertension can be reached on 0800 389 8156.

The proceeds from the barn dance will be split 50:50 between the support group and Great Ormond Street Hospital.

Only 120 tickets for the barn dance are available.

Each ticket is £20 and can be obtained by calling 01425 474833.