'Cork is the worst county for children with Down syndrome'

Families forced to fundraise for vital therapies as a recent reconfiguration of services into Children’s Disability Network Teams has made things 'a lot worse' 

Joanne Hegarty and her daughter Olivia, at the Down's Syndrome Centre Cork, Forge House, Forge Hill, Cork. Pictures: Eddie O'Hare

A Cork-based Down syndrome support centre is appealing to the public to support its latest fundraiser, as a growing numbers of families are coming to the centre “desperately looking for services that they can’t get” from the HSE.

Joanne Hegarty’s daughter Olivia is aged seven, and when she was born, she was the first person Joanne had ever met with Down syndrome.

“It was a big shock at the time. You can feel very alone when your child is born with a disability, but there are organisations like Down Syndrome Centre Cork that are there to support you,” she said.

From Ballynoe in East Cork, Ms Hegarty was one of a group of parents who set up the Down Syndrome Centre Cork, which provides much-needed supports to children and their families, such as speech and language therapy, occupational therapy, and physiotherapy.

We wanted more for our kids, and the services from the HSE just weren’t there. 

"They were bad then, but they’re absolutely shocking now. In terms of waiting lists for different therapies, Cork is the worst county in the country for children with Down Syndrome. We’re waiting two years now for services from the HSE for Olivia,” said Ms Hegarty.

“Kids not only need these services, but they deserve them. When the services aren’t there through the HSE then places like the centre are vital to help parents give that to their kids," she said.

Lisa O'Donovan (centre manager) with Harper Reid, Claire Geary with her son Finn, Joanne Hegarty with her daughter Olivia and son Eoin, and Elaine O'Brien and her son Adam at Forge House.

The last two years of the pandemic curtailed already overburdened HSE services for children with Down Syndrome, and a recent reconfiguration of services into Children’s Disability Network Teams has made things “a lot worse for children with Down Syndrome”, according to Ms Hegarty.

She said they have never had as many desperate families coming to them for therapies that they “just can’t get”, as they are now supporting hundreds of children in the centre.

During the pandemic, HSE services were all curtailed and cut back, they missed out on school, and a lot of parents would say their kids have regressed.

Ms Hegarty said her own daughter Olivia’s speech has regressed because of the impacts of the pandemic on supports and services.

“It’s very hard. I can see the words slipping away. So that’s why we take her to the centre to help her with her speech, and that’s why I’m speaking up for her, because she can’t talk,” she said.

The centre is volunteer-led and completely reliant on donations and fundraising. Ms Hegarty said that the last two years have also put a strain on the Centre’s resources, as they couldn’t fundraise.

The centre is now gearing up for its biggest fundraiser ever, Challenge 21. On June 19, the public are being encouraged to walk, jog, or run 21km, with special guest Olympian Rob Heffernan, from Haulbowline to Páirc Uí Chaoimh to raise vital funds.

Those joining the challenge are asked to raise €21 from 21 people before completing the 21km – symbolising the three chromosomes at position 21 for babies born with Down Syndrome.

“This is a really important fundraiser for us. We get no funding or support from the government, there’s more and more parents coming desperately looking for help, and we need to fundraise to help them and their kids get the services they deserve,” said Ms Hegarty.

For more information and to sign up to Challenge 21, visit here.