For years Lucy Travell-White was in the grip of cystic fibrosis. In April the deadly disease struck. After struggling for five weeks,Lucy gave up. She was only 13. Now her mum tells her story

A MOTHER who watched her only child die after years of fighting cystic fibrosis has spoken of her grief for the first time to the News Shopper.

Samantha White, 35, of Elm Road, Green Street Green, says she will "never recover" from the loss of 13-year-old Lucy, who died of lung failure at Great Ormond Street Hospital.

Mrs White told the News Shopper how Lucy's left lung collapsed after a family holiday to Disneyland Paris in April this year.

The teenager spent five weeks in intensive care waiting for a lung transplant and, in desperation, her parents appealed through the national press for a suitable donor before it was too late.

Hours after her parents made a final appeal, Lucy developed a viral infection and doctors decided it was too risky to proceed with surgery. Tragically, Lucy died a day later on June 6. She was buried in St Martin's Church, Chelsfield, on Monday.

Mrs White, who described her daughter as a "beautiful, happy girl", said: "I was devastated to find out she could not have the lung transplant a day before she died and all of her family were there when doctors switched off the ventilator.

"It was awful watching her fighting for breath in the last couple of days. I had always hoped she would have a long life because she was very active until six months ago, when she became oxygen dependent, and then we watched her deteriorate."

Mrs White said Lucy, who was a pupil at Charles Darwin School, in Biggin Hill, was diagnosed with cystic fibrosis when she was 14 months old after the family became worried about her chest problems and digestive difficulties.

"For Lucy, living with cystic fibrosis was a lifetime of physiotherapy and antibiotics but, despite all she went through, she was incredibly brave and never made a fuss about it.

"She was very creative and artistic and loved animals and nature. And she loved playing with the boys in our street and had a great sense of humour."

Mrs White said she hopes to raise awareness about cystic fibrosis and the problems of donor shortage.

According to the Cystic Fibrosis Trust, based in Bromley, 90 per cent of deaths from the disease are caused by lung failure.

For many, their only hope is a lung transplant but around 50 per cent of patients die while on the waiting list.

CYCSTIC FIBROSIS FACTFILE

Cystic fibrosis, a genetic disease, affects around 7,500 people in the UK.

Sufferers have digestive problems and their lungs

become covered with mucus, which makes

breathing difficult. Frequent hospital treatment and physiotherapy is needed.

One in 25 people in Britain carries the cystic

fibrosis gene. There is no cure for the disease.

Both parents have to be carriers before it can be passed to the child.

Life expectancy used to be eight years. Thanks to medical progress, it is now around 30.

In America, doctors are getting around the problem of donor shortages through living lobes grafts of lungs from living donors which are transplanted into cystic fibrosis sufferers.

Living lobes are available to children under 16 in America, but not in England.

For more information about the NHS

Organ Donor Register, call 0845 6060 400 or visit the website at www.nhs.uk/organdonor