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Last Updated: Saturday, 16 July, 2005, 23:14 GMT 00:14 UK
'Each of our children is different'
By Jane Elliott
BBC News health reporter

Parents want their children with Down's Syndrome to be treated as individuals

Billie-Jo Bailey is a happy friendly child who has lots of friends and enjoys school.

For her family these are the important facts - that she also has Down's Syndrome is a secondary consideration.

Many people meeting her for the first time, however, tend to focus on her Down's first and foremost.

But as her father Richard explains Down's Syndrome is just a part of Billie-Jo, not the whole.

Different

And this is why he and a group of other professional photographers, all of whose children have Down's Syndrome, decided to photograph them and others to show that each child is different.

And the results are a fantastic insight into Down's and the very different lives of the children with it.

They were more like their parents than 'Mr and Mrs Downs'
Richard Bailey

Richard admits that before Billie-Jo's birth, he too had preconceived ideas.

"When she was born we had an image of Down's which was from people we saw when we were growing up.

"But all the children we met when we were taking the photographs were very different. They were more like their parents than 'Mr and Mrs Downs'.

"We just wanted to show how different all these kids were."

He said that although some children have heart problems and that this had initially worried them about Billie-Jo, she is a very healthy little girl and despite needing speech and language therapy is in a mainstream school.

"She is fantastic. She has all her little friends over from school for sleep-overs and she goes to stay with them. It is all pretty ordinary."

Richard said that taking the pictures for the exhibition - which are made up of portraits as well as the 365 head and shoulder shots - had allowed them to meet other parents and that some of them said they were still facing a lot of stigma and ignorance.

"One man had taken his son swimming and someone said to him 'Is it contagious'.

"They were obviously very ignorant, but people do have this stereotype that they all live in a home and are overweight with their tongues hanging out all the time."

Exhibition

He said the response to the exhibition 'Shifting Perspectives', which has been on display in the Oxo tower and attracted about 1,500 visitors and is now on permanent display at the Down's Syndrome Association (DSA), had been tremendous.

Each child was photographed in the same black t-shirt to ensure that the focus remains on them, rather than on anything they are wearing.

He said many people had commented to both himself and the other photographers that it had helped change their perspectives.

"It has been absolutely incredible and has really taken off."

Liz Marder, paediatrician and medical adviser to the DSA, said medics are constantly trying to re-educate parents of newly diagnosed children about what to expect.

She said that much of the literature on Down's was out-dated and very 'pessimistic' and that she tried to give parents a more modern prognosis.

"We tell them that the children are all very different and very individual."

And she praised the exhibition for trying to correct many myths.

"I think it helps people put things into perspective. For instance only about half of children will have heart problems and they can vary from something that goes away by itself to something that can be life threatening."

A spokesperson for the Down's Syndrome Association said an exhibition like this has done much to change perceptions and right myths.

Down's Syndrome
Around one in every 1000 babies born in the UK will have Down's syndrome. (One to two babies are born with Down's syndrome every day in the UK alone)
There are 60,000 people in the UK with the condition
Although the chance of having a baby with Down's syndrome is higher for older mothers, more babies with Down's syndrome are born to younger women
Down's syndrome is caused by the presence of an extra chromosome in a baby's cells. It occurs by chance at conception and is irreversible.

"Following the closure of long-stay institutions and now with the inclusion of children with Down's syndrome in mainstream schools, society's perceptions of people with Down's syndrome are improving year on year.

"However, positive images are still all too rare in the arts and the media.

"The 'Shifting Perspectives' exhibition makes it immediately obvious that the old prejudices about people with Down's syndrome such as "they all look the same" are utterly inappropriate.

The individuality, personality and humanity of every single child and adult pictured come across loud and clear."




SEE ALSO:
Mother wins swim lessons battle
10 May 05 |  South Yorkshire
Down's syndrome gene 'exciting'
31 Oct 03 |  Health
Down's test 'at five weeks'
16 Jul 03 |  Health
Down's babies sought for trial
19 Aug 02 |  Health


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