A test that costs only £2 could have prevented little North Yorkshire girl Sonny Lang needing a heart-lung transplant when she was four, her mother claims.
But Anna Lang, from Tadcaster, said the Government was refusing to introduce screening at birth for cystic fibrosis, despite the plight of children like Sonny. Sonny hit the headlines in 1998 when she became the youngest cystic fibrosis patient to have the double transplant at London's Great Ormond Street Children's Hospital.
But Anna said that if the condition had been detected when Sonny was born instead of after 13 months - by which time irreparable damage had been done to her lungs - the operation and the suffering she went through would have been avoided.
"None of it was necessary," said Anna, of Eastfield Walk. "Yes, she would have had cystic fibrosis, but she would have had the best care. We wouldn't be living with a time bomb, wondering when it was going to go off."
Though there is no cure yet for cystic fibrosis, its impact can be reduced, for example by using antibiotics, which Anna said would have saved Sonny's lungs. She said Sonny, now seven, would not then have needed a transplant - the "end stage" in treatment - until she was about 30, greatly extending her life expectancy, which at the moment may only be into her teens.
"At the moment we haven't a clue how long she's going to live, and that's horrendous," Anna added.
Campaigners are calling for a British screening programme for cystic fibrosis, which they say would cost just £1.5 million, or £2 a child. The Department of Health's national screening committee has so far refused to sanction the move.
But Anna believed the test, which uses the blood pinprick given to all babies, would have prevented Sonny becoming a financial burden on the health service.
No-one was available to comment at the Department of Health.
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