WHEN their daughter was first diagnosed with a genetic disorder that would leave her profoundly disabled, Yvonne and Chris Milne felt they had nowhere to turn.

Today, 20 years after Yvonne founded the Rett Syndrome Association UK, they are confident other families will not be left without support.

"The support for families wouldn't have been there if we hadn't got started when we did," said Yvonne.

She and husband Chris, from Castlemorton, were unaware their daughter Clare had a disability until she was two years old and it became clear she was not developing like other children.

After seeing many different doctors, Clare was one of the first in Britain to be diagnosed with Rett Syndrome, a complex neurological disorder which affects mainly girls and leads to profound physical and intellectual disability.

Now 25, Clare does not walk, has no hand use and no speech. She lives in a specially-adapted bungalow, run by the Home Farm Trust in Evesham, and loves music and people, despite her physical difficulties.

The association Yvonne first started, using a typewriter to send families newsletters, is now based in London. It runs special diagnostic clinics, organises conferences and promotes research.

For Yvonne, a major achievement was the identification of the faulty gene that causes Rett Syndrome. This means families can get an early diagnosis through a blood test.

She and Clare's older sister Victoria, a BBC journalist, were both tested and were relieved to learn that Rett Syndrome is not hereditary. This means Victoria has no more chance of having a child with the condition than anyone else.

Yvonne, who was awarded the MBE in 1997, is also founder and president of Rett Syndrome Europe and travelled to Brussels last week to negotiate funding for a conference in Poland to bring families and medical experts together.

In Europe, particularly Eastern Europe, information about Rett Syndrome is not as widely available as in Britain and the charity is working to solve this. On Saturday, September 17, Yvonne will attend a special conference in Prague.

She is encouraging everyone to get involved in Jeans for Genes Day on Friday, October 7 and wear denim to work or school to raise funds for the association and charities for other genetic disorders.

For more information about Rett Syndrome visit www.rettsyndrome.org. uk. For a Genes for Jeans registration pack, visit www.jeansforgenes.com or call 0800 9804800.