We wouldn't be without our Down's syndrome children

By [lpinchess]

STEPHEN Green is quick-witted, charming and impeccably mannered.

He has stood as a candidate in a local election, plays piano, is a keen canoeist and a whizz at pool.

There have been ups and downs but having Down's syndrome has not stopped Stephen, from Nuthall, leading a busy and fulfilling life.

When he was born 43 years ago, attitudes were strikingly different from today.

Stephen's dad Grenville, 65, said: "We were sent a letter saying 'as you are aware, your child is a mongol.'

The couple had no idea Stephen would be born with Down's, as pre-natal screening for the incurable genetic condition was unheard of in the 1960s.

It was only when a doctor started asking questions and referred him for tests that it came to light.

In 1989 – the year screening was introduced – 717 babies were born with Down's in the UK. By 2000 the number had fallen to 594.

But a new study has revealed more women are now giving birth to children with the syndrome.

The most recent figure, for 2006, shows there were 749 babies born with Down's.

The research by the Down's syndrome Association revealed parents believe the syndrome is more accepted by today's society, and that quality of life has improved.

Grenville, who lost his wife June to cancer 15 years ago and cares for Stephen at home with his second wife Helene, has a message for anyone with doubts or fears about raising a child with the syndrome.

"Come and see Stephen," he said. "He is such a nice man. I'm not saying it's easy having a child with Down's. They need TLC and a lot of time.

"But you will not find a more loving and innocent person than Stephen, provided you look past the Down's syndrome and look at the person.

"I am very proud of him. He has achieved a lot."

Stephen, who is a real joker, said: "I have a good life."

As well as the physical signs of the disorder, there is a risk of heart defects, poor sight and hearing, and learning disability.

But with the right support, the majority of children with Down's syndrome can learn to walk and talk, and many attend mainstream schools, pass GCSEs and enjoy rewarding adult lives.

Stephen, who has a heart murmur, attends dance and mime classes, goes to church and enjoys socialising with friends.

Every Wednesday he helps maintain the grounds of the Shepherd School in Aspley, where he went as a child.

He is a strong swimmer and loves white water rafting.

In June he raised more than £400 for the Evening Post's Maggie's appeal for a cancer caring centre by doing a sponsored canoe paddle on the River Trent.

Three years ago he won 200 votes when he stood as an independent candidate in parish council elections in Nuthall.

Around one in every 1,000 babies is born with disorder, which is caused by an extra chromosome.

Jenny Macaulay, a 41-year-old midwife, was shocked when her daughter Betty was born with the syndrome.

Her 12-week scan had not shown her to be at high risk of giving birth to a child with the syndrome.

"It was devastating initially," said Jenny, of West Bridgford. "It's not what you expect."

Jenny and her husband John, 38,made a conscious decision not to treat Betty differently.

Jenny said: "We are extremely lucky. We have not had any prejudices."

Betty, now five, attends a mainstream school, Lady Bay Primary, where she is progressing well with special support.

Her speech is delayed but if she struggles verbally, she can sign.

Jenny, who is also mum to Eddie, seven, and Nellie, four, said: "First and foremost Betty is our daughter, a lovely, bright, funny little girl who just happens to have Down's syndrome.

"Had I known when pregnant that Betty had Down's syndrome I don't know what I would have done. I wouldn't judge anyone – it's very personal.

"Betty is who she is and I wouldn't change anything about her."

Carol Boys, chief executive of the Down's Syndrome Association, said the results of the study had surprised them.

"It seems to show more parents are thinking carefully before opting for pre-natal screening and termination.

"Being born with Down's syndrome is being seen in a different light today.

"When I and others had our babies it was a very different world. Now there is much greater inclusion and acceptance, with mainstream education having a huge role.

"We think this plays a part in the decisions parents make. There's even been a baby with Down's on EastEnders."

lynette.pinchess@nottinghameveningpost.co.uk