Down's Syndrome group's 10 year anniversary

By Sophie Gidley
BBC News

image copyrightVictoria Hughes
image captionVictoria Hughes and her son Dylan, 14 who has made it into the Down's Syndrome GB swimming squad

It was the look between the midwife and her husband that Victoria Hughes remembers.

She had just given birth to their first son Dylan.

But rather than congratulations, she was told: "We're sorry, your son has Down's syndrome."

With her background in nursing and her husband's as a doctor, the couple had some knowledge of the condition.

But it still did not prepare them for the negative information that came flooding their way.

"No-one spells out all the things that could possibly go wrong for a child when they're born," she said.

"But when you have a child with a disability, with Down's syndrome, they tell you the average life expectancy is 50; they won't go to mainstream school; they won't do this and that.

"They just say all the negatives."

Fourteen years later and Dylan has defied those initial expectations.

He is flourishing in year 9 at mainstream school and has made the Down's Syndrome GB swimming squad.

But that initial lack of support led to his mother and two other mothers of children with Down's syndrome to take matters into their own hands.

When Dylan was a toddler, a health visitor introduced his mother to Katharina Barker and Nicky Williams.

Both women also had babies with Down's syndrome.

image copyrightKatharina Barker
image captionKatharina Barker and her daughter Amelie, who is in mainstream secondary school, starting her GCSEs

And all three discovered they had shared similar experiences in terms of a lack of support for people with Down's syndrome and their families.

Katharina said although she had had a "very positive, supportive" experience with the birth of her daughter Amelie, she quickly struggled to find specialist support.

"One of the things I found hugely frustrating, unless you are pointed in the right direction you are not going to find services, they are not coming to you," she said.

They decided to host a coffee morning for parents with children with Down's syndrome to make friends and share experiences.

The success of it led to the trio setting up a charity and the support it offers includes speech and language therapy, school help and annual education conferences.

Although Nicky has since stepped down from the Monmouth-based 21 Plus charity, which is celebrating its 10th anniversary, Victoria and Katharina are determined to expand its reach as much as possible.

And their hard work and dedication led to them becoming finalists in the national St David Awards citizenship category.

They want to continue helping children with Down's syndrome "achieve their potential and increase access to opportunities".

"One of the mums said to me yesterday that one thing she loves is being able to ask any question, even if it sounds daft and she wouldn't have the nerve to ask anyone else, she can ask us," Victoria said.

"I guess that's why I do it. I don't want any of our families to think, 'I wish I'd known about…' or 'I wish I'd known that earlier'."

"I believe in expert parents and I want to make it possible for our families to become experts if that's what they want."

Katharina added: "We want to give children the chance to access schooling, to access learning and to access the world.

"The greatest thing is to see the children grow up, to see them developing and how well they're doing.

"It makes it so worthwhile, it's wonderful."

image copyrightWales News Service
image captionFounders Katharina Barker and Victoria Hughes are celebrating the charity's 10th anniversary

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