‘We are here for you’: Long-standing Down Syndrome Group encourages families to reach out

The charity is run by parents – for families, expecting parents and people living with Down Syndrome – and has made a positive difference across the county for the past 25 years.

A monthly group is held for parents of children up to five years old, as well as regular family events including a summer barbecue, Christmas party, film days and ice skating, among much more.

These events are all free of charge or heavily subsidised, and they currently support 100 families locally.

Steve Scott was recently elected as a trustee, after he and his partner Natalie welcomed their daughter Verity into the world in February 2023. They did not know she had Down Syndrome until she was born.

“We knew almost nothing about Down Syndrome, other than outdated stereotypes,” said Steve. “We had no idea during pregnancy and it was a big surprise and learning curve for us.”

While Natalie and Verity were in hospital, Steve set out to learn all he could about the condition and the charities that offer support – which is when he discovered the Down Syndrome Group Northamptonshire.

His aim as trustee is to raise awareness of the charity, so new or expecting parents can turn to them to discuss concerns, expectations and meet others they can relate to.

The charity also enables families to widen their support networks, and signposts them to other services that may be useful.

Speaking honestly, Steve told the Chronicle & Echo: “I thought having a child with Down Syndrome would be hard work and a burden, which are the stereotypical things that go through your head.

“Initially it was a shock but she is so loved by the whole family. You don’t look at her and see a child with Down Syndrome, you see our Verity.”

An important aspect of the charity is dispelling harmful myths and stereotypes. One that Steve worried about was that Verity would not live a full life.

“That’s completely outdated,” he said. “Verity has a heart defect and three holes in her heart. That’s common in Down Syndrome children when they are born, and it is being recognised now and fixed at an early age. They live into their sixties, seventies and eighties like everyone else.”

Verity is Natalie and Steve’s fifth child and they know that all children learn and develop at different stages throughout their childhoods.

Steve said: “She needs nurturing like any other child. Some things may take a little bit longer, but she may pick up other things quicker.”

The most important aspect of the charity, and which Steve has benefitted from most, is the honest advice and background from those who have their own children with Down Syndrome.

The father expressed his concerns that he does not know what to expect when Verity goes to school, but knows he can bounce off other families who have been through it before.

Steve wanted to give back and bring a fresh approach to the group as a trustee, and looks forward to organising more events moving forward.

With a new website and social media pages in the works, you can find contact details for the Down Syndrome Group Northamptonshire here.