Researchers believe they may have come up with a test which could eventually replace more invasive tests for Down’s Syndrome.

The Dutch researchers recently told a fertility conference they were on the verge of developing an accurate way of testing the mother’s blood for chromosome disorders. This would provide an alternative to invasive tests which give an accurate result, but increase the risk of miscarriage.

But Dr Wendy Uttley, who runs the Down’s Syndrome Training and Support service in Bradford, believes education, training and support is what parents need to enable them to make more informed decisions.

“I don’t know why there is so much effort to try to diagnose Down’s Syndrome. There are so many other things out there,” she says.

“I’d like to think there is more information out there for parents and for the people working with them and offering them the tests, good information about what Down’s Syndrome is.”

Wendy has first-hand experience of the lifelong condition which causes a degree of learning disability and an increased risk of health problems.

Her son, Sam, was three weeks old before he was diagnosed. Not knowing anything about it, the former teacher wanted to learn everything she could, but the first book she picked up, written in the late 1980s, was so negative she wanted to so something to change attitudes towards Down’s Syndrome.

“The first line read, ‘if you have decided to keep your child,’” recalls Wendy.

From that moment, Wendy embarked on a new chapter researching all she could herself about the condition.

She and her partner Peter also put together a video of Sam baking and riding a bike round the garden of their Bradford home to demonstrate how children with Down’s Syndrome were capable of leading a normal life with the same hope and aspirations.

Sam had major heart surgery when he was three, but he has never let the condition hold him back. He is now 12 and in mainstream school.

“We were not as hung-up about Down’s Syndrome as we were about his heart condition. We spent the first year of his life just hoping he would live,” recalls Wendy.

“That is one of the things I talk to parents about. You get yourself in a bubble and live through it, but Down’s Syndrome has never worried me. Sam is a fantastic lad and he is so happy.

“He struggles, but we all do. It is hard for him, but it doesn’t hold him back.”

When Sam was two, she and Peter, who also have a 14-year-old daughter Elanor, and three other families launched the Down’s Syndrome Support Group.

Originally, Wendy created an office in their Bradford home. As the charity grew, she gave up her job as an A-level team leader at Bradford College.

In November 2005, a Big Lottery Grant of £98,000, spread over three years, helped them to set up an office in Heights Lane, where Wendy began running early intervention groups – teaching early speech and number skills and motor development.

Wendy was already delivering training for parents and professionals. “There is massive need for support, but training is built into that, because we need training to take things forward.”

She believes training teachers and other professionals gives them a greater understanding of the needs of children with Down’s Syndrome, but like many charities, they need funding to continue their valuable work.

When their second lottery bid was turned down, they feared the charity would fold, until a story about their plight in the T&A led to them receiving a £150,000 legacy from Bradford chimney sweep Hughie Sunter.

Mr Sunter’s daughter, Pamela, was born with Down’s Syndrome. She died some years ago, but her memory is living on in the Thackley centre Wendy and her team set up in her memory.

But the money will not last forever, and Wendy is conscious that work needs to continue to raise awareness through training and support.

“The satisfaction is seeing something that I have put a lot of effort into working, whether it be with the children, or having support for parents,” says Wendy.

Wendy says she has noticed demand for her services is increasing, which indicates a growing need.

Currently, one in every 1,000 babies is born with Down’s Syndrome, but according to Wendy, numbers are rising. In 2009, the centre saw a 40 per cent increase in families seeking its services.

Wendy believes the increase is partly due to women leaving it later to start their families. “As you get above 35, you are looking at a one-in-85 chance of having a child with Down’s Syndrome,” she explains.

She says having a child is a life-changing decision anyway, whether they have Down’s Syndrome or not, but the decision to terminate is one parents have to live with for the rest of their lives.

“The parents I know wouldn’t swap it. It is life-changing but it’s a good life change,” says Wendy.

For more information, visit the website downsupportbradford.ik.com.