Harry is a smiley six-year-old, a chatterbox and best friends with his sister Ruby. He also has Down’s syndrome.
The condition affects one in 1,000 children born in the UK and Harry’s mum Jessica wouldn’t change him for the world.
But with a new prenatal test for Down’s syndrome likely to be on the NHS, Jessica is worried with perceptions of Down’s as they are, Britain may go the same way as Iceland, where all prenatal Down’s diagnoses lead to a termination.
She said: “We fear for the future and I fear for Harry’s future in 20 years’ time, when there might not be so many children with Down’s syndrome being born.
“They’re able to achieve so much in their lives, get a job, get married, have children, and it’s just making sure that we educate people about it.”
The non-invasive prenatal test (NIPT) can predict the chances of Down’s syndrome with more than 98 per cent accuracy, as well as other genetic conditions.
Like comedian Sally Phillips, who recently released a documentary on the test, Jessica is pro-choice, but feels a stigma attached to the condition puts expectant mothers under pressure.
She said: “It’s the parents’ choice and with the NIPT, it gives the opportunity, it gives the chance for the parents to be prepared, but it needs to be delivered in an unbiased way so parents can make an informed choice.”
She added that feedback from mothers at St Richard’s Hospital had been very positive for both pre- and post-natal diagnosis.
The test could also help people be prepared for complications such as heart defects, which affect around half of children born with Down’s syndrome.
Harry is now attending an ordinary school, where he receives academic support, but thrives socially. “I was standing there watching a bunch of the boys from his class just running with him and it was wonderful,” Jessica said.
“So many parents say ‘it’s wonderful to have my child with somebody different so they embrace diversity and know how to deal with it’.”
As membership secretary of the Chichester Down’s Syndrome Support Group, Jessica hopes that words like ‘victim’ or ‘suffering’ can be disassociated from Down’s.
“We are extremely lucky to have Harry in our life and be surrounded by many others who are in many ways like us but bring difference,” she said. “Diversity brings much beauty and we should embrace it.”
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