'Kids with Down syndrome can get left behind': Charity aims to help members after they leave school

Over 100 cyclists will take part in the Tour de Munster, which runs from August 8 to August 11, raising much-needed funds for Down Syndrome Ireland and other deserving charities.

Paul Butler and his daughter Rachel. The youngest of three siblings, Rachel was born with Down syndrome, and the family were unsure of what help — if any — was available. Picture: Dan Linehan

When the Butler family welcomed their daughter Rachel into the world in 2008, they faced an uncertain future.

The youngest of three siblings, Rachel was born with Down syndrome, and the family were unsure of what help — if any — was available. Following her birth, Rachel and the family spent the first few months in Crumlin hospital due to her multiple heart defects.

During her first three years, Rachel had to undergo three open heart surgeries, the reality for many families of children with Down syndrome.

The Butler family, from Cahir, Co Tipperary, credit Down Syndrome Ireland and particularly the Tipperary branch of Down Syndrome Ireland, for helping them to navigate all the different challenges they faced.

Rachel’s father Paul Butler, who has volunteered with the organisation for the past four years, says he will always remember the invaluable support his family received. The family reached out to the charity for help after learning of Rachel’s condition and were unsure where to turn.

“I suppose the first thing that I think comes into anybody's mind when a child is born with any kind of special needs is: what do I do now? Where do I go? Where can I get help?,” Paul said.

After contacting Down Syndrome Ireland, the family learned of the supports available and Paul says, most importantly, understood they were not alone in their journey. 

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The family leaned on the Tipperary DSI branch for activities and services that weren’t otherwise available, particularly during Rachel’s early years, which coincided with the financial crisis.

At the time, the Tipperary branch did not have a headquarters, and so members were reliant on renting rooms in sports halls, hotels and schools in various locations across the county to meet one another.

Fast forward a couple of years, the organisation purchased a centre in Thurles, which was renovated by the Helping Hands Foundation and a number of volunteers, opening just as the country was coming out of lockdown.

“So I suppose what we're getting now from Down Syndrome Ireland and Down Syndrome Tipperary is a huge amount of support. We've got a place to meet, a place to meet other parents, a place to meet other kids,” Paul added.

The centre, which has over 100 members, allows families like the Butlers to access subsidized services such as speech and language therapy and occupational therapy.

Paul says while the branch has activities for children or teenagers, they are now keen to focus on adult members who may have dropped out of the system.

Paul Butler and his daughter Rachel in Thurles, Co Tipperary looking ahead to the annual Tour de Munster fundraising event for Down Syndrome Ireland. A four-day, 600km cycle through the six counties of Munster, the event has raised €4.6m for various charities to date. Picture: Dan Linehan

“When it comes to 18 and you're out of school, there's a huge danger that you kind of drop out of the system altogether, There's very little available for people after that age. So, we're kind of making a big push to try and get the adult members back into the branch,” he said.

Describing the centre as “their house”, Paul said he hopes it is a place they regard as home, somewhere they can meet their friends and always come to.

“Unfortunately, being realistic, as the kids get older as they get into their teens, they find that maybe the people that they knew in local clubs and local schools kind of start to drift away,” he said.

They have their own lives; they have their own activities they get involved in and unfortunately the kids with Down syndrome sometimes get left behind or pushed aside.

These services and facilities would not be possible without immense fundraising efforts and teamwork, Paul says, particularly the Tour de Munster cycling event.

The fundraising event, which began in 2001, is a four-day, 600km cycle through the six counties of Munster, and has raised €4.6m for various charities to date. Over 100 cyclists will take part in the cycle, which runs from August 8 to August 11, raising much-needed funds for Down Syndrome Ireland and other deserving charities.

“As a parent of a child with Down syndrome, we're so grateful to the organizers of Tour de Munster, Paul Sheridan and all his gang and Sean Kelly the cyclist, who turns up every year,” Paul says. “Without people like them and supporters right around the country, we wouldn't have the centre,” Paul added.