Life for 17-year-old Jessica Jaffa is different from many other teenagers.

Although she enjoys pop concerts, takes horse-riding and swimming lessons and goes out for meals with her family just like many others her age, she suffers from Rett syndrome. A complex neurological disorder, it means Jessica cannot walk unaided or talk and hyperventilates regularly. She also suffers epileptic fits and curvature of the spine scoliosis.

"I first realised something was wrong when Jessica was only two-years-old," said her mother, Lorna Jaffa, of Rotherwick Road, Hampstead Garden Suburb. "She wasn't walking, couldn't roll over and would have screaming fits where she was inconsolable and this would make me feel very isolated.

"Nobody really knew about Rett syndrome then and I had all sorts of people from pre-school teachers to therapists visiting the house to try and discover what was upsetting Jessica. But nobody knew what the problem was."

Lorna took her daughter regularly to see a consultant at Great Ormond Street Hospital but it was not until the hospital's registrar saw Jessica that Rett was first mentioned as a possible cause. The condition mainly occurs in females affecting at least one in every 10,000 girls born.

"In 1990 we discovered that Professor Rett, the syndrome's founder, would be attending a conference in Leicester so we thought we'd bring Jessica along," Lorna explains. "When we were there we met the professor who diagnosed her with the condition there and then.

"At first my husband and I were devastated. It is very difficult when you realise your daughter is going to have these problems for the rest of her life and her condition can not get any better. Other problems also spring to mind like how she will cope if she outlives us, which could quite easily happen."

However, Lorna says the strength of her relationship with her husband, Ronnie, has helped the couple work as a team and remain positive despite the daily difficulties they have to face bringing up Jessica.

"Many families cannot take the strain when they find out their child has Rett. In fact I know of some women who have been left alone after their partners have walked out blaming it on the strain of bringing up a child with so many needs," Lorna adds.

Lorna not only has a child with Rett but she is vice-president of Rett Syndrome Association UK, RSAUK a national charity based in Friern Barnet Road, Friern Barnet.

The association's director Anna Salamonowicz said: "Rett is genetic in origin and affects girls mainly. At birth and for the first year or so the child appears to develop normally so families are often unaware that anything is wrong.

"Many children learn how to walk or talk then suddenly their development stops and they regress. Most lose their speech and useful hand movement and epilepsy, digestive problems and curvature of the spine often follow. Breathing problems are also present which makes a meal or drink very difficult," she explains.

This means the child becomes totally dependent on others for all their daily needs for the rest of their life. Anna says one in every 10,000 girls born has Rett and it also affects a small number of boys.

Lorna adds: "We help families which includes parents, carers, extended families and interested professionals in the borough in many ways. We rely almost entirely on donations and grants for our income. Each year we need to raise more than £200,000 and I hope that as more people become aware of our charity and as knowledge about Rett Syndrome increases we will secure more regular funds"

The charity's next fundraising event is the Golden Jubilee 10K Open Road Race in London on July 21. To give a donation or for further information email info@rettsyndrome.org.uk, call RSAUK on 020 8361 5161 or write to RSAUK at 113 Friern Barnet Road, London, N11 3EU.

June 11, 2002 18:30