A new book celebrates the short life of Sally Johnson who, despite Down's Syndrome and ill-health, achieved far more than most. Women's Editor Christen Pears reports.

AFTER three miscarriages and years of heartache, this was the moment Sheila Johnson had been waiting for. She cradled her newborn daughter in her arms, gazing down at her tiny, flower-like face. "Hello Sally," she whispered.

But her joy was short-lived. "Have you noticed anything different about her?" the doctor asked. Sheila shook her head. To her, Sally was perfect. She was the baby she had yearned and prayed for. "We think she's a mongol," continued the doctor. Sheila stared at him in disbelief, her world turned upside down.

Ten days later, the diagnosis of Down's Syndrome was confirmed. The family's GP advised Sally's father Ken to put her into a home or she would end up being the "village idiot". Another predicted she would make a "reasonable cabbage".

"We were given absolutely no hope at all when was born. No hope and no help, but things turned out so differently," says Sheila. "It's like a rags to riches story."

If Sheila had known the impact her remarkable daughter would have on the lives of thousands of people, perhaps those first few years would have been easier, but she and Ken had to fight to give Sally as normal an upbringing as possible.

At first, many people looked at her with pity or revulsion. One elderly neighbour in Thornton-le-Dale near Pickering, in North Yorkshire, said she should be sent away or she could end up lowering property prices in the village, but the couple refused to hide their daughter away.

As she grew, she began to show the charm and enthusiasm that would win her so many friends. Bright and inquisitive, she joined a playgroup, where she flourished. By the time she was three, she was talking and reading but while she was making progress mentally, she was demonstrating physical problems.

She still wasn't walking and the slightest physical effort left her exhausted. After numerous tests, she was diagnosed with a heart condition so serious doctors predicted she wouldn't live much beyond her fourth birthday.

Knowing that every time Sally went to playgroup or the park, there was a chance she could die, Ken and Sheila had to make a terrible decision. Should they keep their little girl at home, wrapped in cotton wool, or let her go out and enjoy the world?

"She was in pain from the word go but we decided we would make sure that she had every chance to live life as normally as possible. It probably shortened her life by maybe a few years but it was worth it. She loved every minute," says Sheila.

Fitted with callipers to strengthen her weak ankles and her pram replaced with a wheelchair, Sally started school and, although her health was still fragile, she showed real tenacity.

While at school, she completed the Duke of Edinburgh bronze award and then, against all the odds, became the first person to achieve the coveted silver and gold awards in the Gateway Challenge - a test of self-reliance and courage devised by Mencap.

She began to work one day a week with Alzheimer's patients as a volunteer at a private care home in Scarborough. She soon became a firm favourite with the residents but it was through her art that she really shone.

Ken and Sheila, both artists, gave Sally a painting set for her 15th birthday. She sold her first painting to one of her teachers for £5 and donated the money to charity.

"She had seen a starving Ethiopian baby on television and said she wanted to help. After that, every painting she sold, she gave the money away," explains Sheila.

Sally first came to public notice when she won a painting competition organised by Mencap. After that, the Down's Syndrome Association (DSA) asked her to do all their artwork and one of her pictures went on a nationwide poster campaign to raise awareness about Down's Syndrome. It said simply: "This is the work of Sally Johnson. She has sold more paintings than Van Gogh. She also just happens to have Down's Syndrome."

Overnight, she became an ambassador for the DSA and Prime Minister John Major hung one of her paintings in his office at Number Ten. But as she approached her 20s, her health began to decline. She collapsed frequently and relied heavily on an oxygen cylinder that accompanied her wherever she went. More alarmingly, her sight began to fail but as it became more difficult to paint, she turned to poetry.

Sheila says: "She got up and got on with it. I never, ever heard her complain. She had a very serious heart condition and the least bit of exercise exhausted her. She had gout in all her joints and that really limited what she was able to do."

Sheila went through agony watching her daughter suffer, particularly towards the end of her life when she would pass out six or seven times a day. Although Sally remained positive, it was obvious she was desperately ill, and she died in April, aged 25.

"I miss her terribly," says Sheila. "I have a legacy of pictures and memories but I miss her very much. I do get a lot of comfort from knowing that a lot of people have been touched by her courage and example."

Sally's life is remembered in a new book - Sally, Face Like a Flower - by former Northern Echo journalist Bill Harrison. He got to know her shortly before her death and wrote several newspaper articles about her.

"She was a remarkable child," he says. "She was probably dying from the day she was born and she had so many physical disabilities but she never complained. That was one of the great things about her.

"After she died, Sheila told me that Sally kept a diary and she always wanted to write a book. I decided that it was something I could do for her. It's an inspirational story and one that needs to be told."

Sally, Face Like a Flower, is available for £7.95 + £2 p&p from The Down's Syndrome Association, The Langdon Down Centre, 2A Langdon Park, Middlesex, TW11 9PS. Tel 08452 300372.