Help for CF sufferers
From Janet R. Jacques
Sir: It was hard for me when Gordon Brown revealed that his son Fraser had been diagnosed with cystic fibrosis, because my son, too, has CF; and because although the newspapers were relatively upbeat about CF, none mentioned the desperate need for government money. Mr Brown expressed optimism that the advances being made in medicine will help his son and many others. But scientists working on a gene therapy cure for CF believe that some £50 million is needed to develop a ‘working cure’. If that money was forthcoming, we might see a cure in the next five years and hopefully in my son’s lifetime. (He is 27 and the average CF life-expectancy is 30.) CF is the UK’s most common genetic illness; one in 25 people are carriers and sufferers must have a good diet and take plenty of exercise. But as lung capacity decreases, taking regular exercise becomes impossible. Another hurdle faced by those with CF is their yearly prescription charges, as the disease is not regarded as a chronic condition.
As well as caring for my son, I have been fundraising with another mother whom I met at the Brompton Hospital. Together, Ruth Angel and I have raised over £2 million organising street collections, quizzes and balls, but it is just a drop in the ocean. Now it must be up to the government to help us make a real breakthrough.
Janet R. Jacques By email
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