When Joanne McKeown took her baby for a check-up, health visitors were more concerned about her.

Although her barking cough was getting worse, she put it down to her life of change since she and her husband, Michael, had their first child.

But Joanne's life fell apart when was diagnosed with a rare lung disease with no effective cure just over a year after the birth. Although she is currently being treated with steroids, she may eventually need chemotherapy and even a lung transplant if her condition worsens.

Joanne, of Peacehaven, has histiocytosis, a complaint affecting just one in every 200,000 people in Britain. The illness scars the lining of the lungs and creates cavities in their walls. It eventually leads to the lungs losing their elasticity which makes breathing more difficult.

Joanne, a 27-year-old carer, said: "I just thought it was a cough at first caused by all the changes with having Liam. I didn't worry too much about it."

After her visit to the clinic with Liam in the winter of 1997, she had several tests. But in June, 1998, with her son only 11 months old, she had an open lung biopsy to try to find the cause. Histiocytosis is so uncommon that doctors were not completely sure if Joanne had the illness or not. They carried on testing her and monitoring her condition.

By this time, Joanne's health was suffering. Her weight started to plummet. Already a slim 8st, she lost one-and-a-half stone. Her mother, Jan Boarer, 50, was determined to find out more about the illness.

Jan said: "We couldn't find any books on it in the shops and so we turned to the internet." Jan now believes the family has discovered more about histiocytosis in just six weeks than they did in the 18 months since Joanne was diagnosed.

Joanne's uncle, Colin Turner, 50, is running in the London Marathon on Sunday to raise cash for the Histiocytosis Research Trust.

If you want to help, contact Jan Boarer at 25 Lee Way, Newhaven, BN9 9SN.

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