WHEN a normal, happy baby suddenly looses control of her body and sinks into a downward spiral of regressive health, a parent can only watch helpless and despairing.

Yvonne Milne, a former marketing lecturer and organiser of Malvern Council's Voluntary Service, believed in 1981 that she was blessed with two perfect baby daughters, aged three and one. Then, a few months later, her younger daughter Clare began showing the devastating signs of Rett Syndrome, a then unrecognised genetic disorder.

It's a syndrome brought about by a one-off fault that occurs in the genes of a developing baby and can trick parents by rearing its head in a baby's second year, when their developing child gradually loses control.

Yvonne said: "Sometimes the walking stops and then the baby develops repetitive hand movements, epilepsy, breathing problems, curvature of the spine. They emerge from that period of regression, which lasts sometimes months, sometimes years, profoundly multiply disabled and are totally dependent for care. My daughter Clare is totally helpless."

Although Rett Syndrome was discovered during the 1960s by Austrian scientist Professor Andreas Rett, it took 20 years to become acknowledged around the world - a time which coincided with Yvonne's desperate search to find out what was wrong with Clare.

"Clare was one of the first in the country to have the diagnosis when it was a brand new disorder," said Yvonne. "We felt so alone. Her diagnosis left me feeling helpless and heartbroken, so I decided to do something positive; to get something going."

She started the Rett Syndrome Association UK in 1985 from her kitchen table and, since then, there has been tremendous work done all round the world.

"I decided that it was the thing to do and I could see such benefits from it," said Yvonne.

"When people started joining me and we made progress it was such a wonderful thing. It had a wonderful healing affect on me because we were finding therapies, the best method of teaching, of communicating and the best ways to cope with all the other problems, like scoliosis (curvature of the spine).

"We found out about music therapy very early on. Prof Rett gave us such wonderful advice when he came over to our meeting in 1985. He said music and physiotherapy were very important and we eventually got music therapy put on Clare's statement of educational need at her school."

Although Clare cannot talk, her family use music to communicate and have devised a library of songs to encourage her or tell her what she needs to do.

"It's a very, very effective means of communication. Music also helps when she's having physiotherapy. It both calms and relaxes her."

After Yvonne fought for an NHS Trust hydrotherapy pool, which was opened in April in Malvern's Osbourne Court by Princess Anne, Clare has learnt to walk with very little help while listening to Dire Straits.

Looking to the future, Yvonne said: "We were told before we knew Clare had Rett Syndrome that she had a degenerate disorder, which wasn't accurate. We were told to make her happy and she would die, which wasn't true. She has got, we hope, a very happy future ahead of her. She now lives at the Home Farm Trust in Evesham and the benefit of that is she is now on her own and not totally reliant on us. She is in a place we have chosen and is with three other people with Retts. She maintains a good quality of life and keeps in contact with her family.

"The future for the association is also extremely good. We already have a head office in London and have paid staff doing a lot of the work. What we want to do is develop centres of excellence around the country so that families can go for help and assistance at regional centres rather than travelling thousands of miles to our twice-yearly clinics.

"We want to develop expertise all round the country. It's a relatively rare disorder, which affects one in 10,000 girls and many GPs may not have seen it before. Without the love and care of their families and modern medicine, these lovely people wouldn't survive."