Twenty years ago the Hendon Times featured the moving story of cystic fibrosis sufferer Aimi Barr celebrating her first birthday.

Many readers will remember the toddler's struggle for life as she was first diagnosed with the hereditary disease and then suffered stomach blockages which required numerous operations.

Add to that diabetes and osteoporosis and Aimi's fight for survival became even greater.

On Friday, the 20-year-old lost her fight against the disease which dominated her life. Waiting for a lung donor since the start of the year, the former Copthall School student died at the Royal Brompton & Harefield Hospital in Chelsea.

But as her mother Anne explains, she never gave in to her illness: "She was such a lovely person but she never let her illness get her down. She was the most loving person in the whole world and she was always smiling," said Mrs Barr, of Purcells Avenue, Edgware.

"Aimi had lost a lot of friends over the years in hospital and that was quite upsetting for her. She accepted it but it must have frightened her. All of her friends were like her, all with a bright smile," Mrs Barr added.

Aimi required four hours of treatment a day in her last three years, being put on a nebulizer and being treated with intravenous injections and antibiotics.

Gene therapy, replacing the faulty CF gene with a healthy copy, and protein repair are two approaches being explored to treat the disease in the future.

Aimi's parents are hopeful more people will become donors and gene therapy can be developed to an extent that will prevent many children going through the same as their daughter.

"Professor Geddes at Royal Brompton is asking for £15million to solve the gene problem but it could take five years, so we just hope more people come forward as heart and lung donors," said Aimi's dad Jack.

Aimi's funeral takes place on Friday at 10.45am, Golders Green Crematorium, Hoop Lane, Golders Green, and flowers are welcome.

Key facts:

Cystic fibrosis (CF) is the most common life-threatening inherited disease and affects more than 7,500 people in the UK

One person in 25 carries the defective gene that causes CF. If both parents are carriers of the gene, there is a one-in-four chance their child will have the disease

The disease attacks the lungs and the digestive system, clogging them up with a thick mucus

Three young people die each week from CF and the average life expectancy is 31 years

October 31, 2001 18:01

KEVIN BURCHALL