It was only when Becky Jenner picked up a copy of The Argus that she began to have an inkling of what was wrong with her child.

Rosie was ten months old but well behind in her development. She could not bear weight on her legs and was not crawling or trying to pull herself up.

Her mother knew something was wrong but was unsure exactly what the problem was.

Then she read our story about a child with Rett syndrome, a neurological condition that leaves sufferers with multiple disabilities.

Becky realised Rosie had similar symptoms to those in the article and insisted her daughter was seen by a paediatrician.

The doctor dismissed Rett syndrome, saying it was impossible to diagnose until a child was at least three or four years old.

When Rosie was 14 months old, Becky read another article about an Eastbourne family with a daughter with Rett syndrome and arranged to meet them.

She said: "They took one look at her and said straight away that she had the condition. They put us in touch with the Rett Syndrome Association and UK expert Alison Kerr.

"We took Rosie to the association's family weekend and Dr Kerr immediately confirmed diagnosis and wrote to advise Rosie's paediatrician."

At 17 months old Rosie was finally diagnosed. The enormity of the condition began to hit the family.

Becky said: "In some ways it was a relief to have it finally confirmed after months of uncertainty but then the shock started to sink in as we realised just how profoundly handicapped she was going to be."

Seven years on, Rosie is a happy nine-year-old who enjoys horseriding and swimming.

She has epilepsy, has never been able to walk and has problems with eating and drinking.

She weighs 17kg, the same as her three-year-old brother. She cannot speak.

Becky said: "She does not like eating or drinking. It is all a bit too much of an effort for her and she can't seem to make herself enjoy it or do it. She is now on a waiting list to have a tube fitted so she can get her nourishment through that."

Despite her problems, Rosie enjoys going to Hillside Special School in Portslade and gets on well with other children.

Becky, 38, from Portslade, said: "She can't speak but she can communicate and make it clear what she wants. She often does it by staring at something she wants and staring back at you, then looking back again."

Rosie has a good relationship with her younger brothers Elliott, seven, and Matthew, three, and gets on well with stepfather Tony.

Becky is honorary secretary of the Rett Syndrome Association.

She also set up an after-school club at Rosie's school for children with disabilities and those from mainstream schools.

Despite the time Becky spent looking after Rosie and learning more about the condition after she was diagnosed, she also started a business studies degree.

It was while on the course she set up the after-school club, which opened almost a year ago.

Becky said: "Another reason for starting up the club was so I could do something with the boys.

"Now I can take Elliott and Matthew swimming and do other things with them while Rosie is at the club two afternoons a week."

The Rett Syndrome Association is one of several charities to benefit from this year's Jeans for Genes Day.

Becky said: "We need to get all the help and support we can to ensure research continues.

"We also need to make sure families of children with the condition get all the information and back-up they need.

"That is why events like the Jeans for Genes Campaign are so important. They help to raise awareness of serious illnesses and conditions and get support for them at the same time."

Jeans for Genes Day on October 1 is managed and led by the Great Ormond Street Hospital Children's Charity.

Individuals, groups, organisations, schools, clubs and businesses can all take part by paying £1 to wear jeans.

For more details, go to www.jeansforgenes.com, call 0800 9804800 or write to: Jeans for Genes Appeal, PO Box 5, Colchester CO2 8GE.