Cora Horgan talks about the impact Down Syndrome Ireland has had on her family, and the vital cycling fundraiser Tour de Munster that generates much-needed money for education and therapy programmes
Charlie Horgan is 10 years old and the eldest of four — JJ (5), Joni (4) and Luca (2). He lives on a farm in Tipperary and loves helping his dad James with any jobs that need doing — he also loves hurling, soccer and pretty much anything which keeps him active.
Full of life and mischief, the fact that he has Down syndrome is just one aspect of his much-loved personality and, while it by no means defines him, his mother Cora says it took some getting used to initially as she had no experience of the condition before Charlie was born. But thanks to support and guidance from Down Syndrome Ireland (DSI), she soon gained all the necessary knowledge, met other parents and learned how to access relevant therapies.
The charity relies on public support and as the Tour de Munster, an annual 600km cycle which raises much-needed funds for the Munster branches of DSI, takes place from August 4-7, the mother-of-four is really keen to support it.
“Before Charlie was born, I knew no one with Down syndrome,” she says. “He was born nine weeks premature and it was a massive shock for us to be told he had DS. It took me a long time to really come to terms with what it was. But one of the first things I did was google Down syndrome and the DS Ireland website popped up, so I got in touch with the local branch very quickly.
“One of my earliest memories was going to a house of one of the members to attend Speech and Language therapy in their basement — and when I see what we have available now, it’s amazing to think we were dependant on the goodwill of one of the members lending a room in her house.
“Another memory was meeting some other mothers when Charlie was nine months old in a soft play centre and while it was brilliant to meet other mums, I still felt broken inside and scared for Charlie, so it was also very difficult. But my initial involvement grew from there — we met in community halls in the middle of nowhere, a local tennis club, a tiny office space in the middle of Cashel, basically anywhere we could find to access therapies which were not available from anywhere else.”
Cora, who used to work as CEO of Youth Work Ireland, Tipperary, says along with support and friendship, DSI also offered fundamental therapy, which was vital for Charlie’s early development. “There was always a range of different things we could get involved in — from speech and language to OT [occupational therapy], music, dance, reading supports, homework supports and of course social skills,” she says.
“Also, DS Tipperary has always been the main source of Charlie’s social circle outside his immediate family. We have gone to Christmas parties, summer camps and lots of other events, and as he’s getting older, the friends are starting to become more than just ‘other kids in the group’, but actual buddies.
“He has to learn the most basic social skills such as reaching out and getting involved voluntarily in conversations and not depending on others to draw him in, and a lot of his programmes now are focusing on this. Another key support for us has been getting to know other parents, and being able to sit down and have a good moan, or swap tips and information.
"It can be difficult sometimes to relate to other mothers of kids who don’t have special needs, but here you are immediately amongst friends who ‘get it’ — who know that your child is special but also drives you off your head. "
"It can be difficult sometimes to relate to other mothers of kids who don’t have special needs, but here you are immediately amongst friends who ‘get it’ — who know that your child is special but also drives you off your head. They know how frustrating it can be to access supports sometimes, and they know how it feels when your child finally walks, or toilet trains, or learns to ride a bike.
“As Charlie gets older, and my other children get a little more independent, I’m trying to become more active in the branch as it’s run by volunteers. There is a super committee at the core of the branch, which have managed to build a state-of-the-art facility in the last 18 months. Thanks to fundraising and volunteers, we now have a purpose-built place for our children’s needs, and no longer have to use unsuitable venues or cold community halls for our projects. Instead, we have warm comfortable therapy rooms and a place for the members to call their own.”
The new facility wouldn’t have been possible without fundraising — and events like Tour de Munster are what keep the doors open and supports available to Charlie and all of the other members like him who rely on the centre.
Cora says that without the efforts of those taking part and supporting the cycle and other fundraisers, life would be very different for all of those who depend on DSI. “Tour de Munster is of huge importance to us, as the funds raised allow us develop and deliver a range of services which otherwise the members would not have access to,” she says.
“While we were in lockdown, the only supports Charlie received were through DS Tipperary, with weekly therapy Zooms in educational tutoring, speech and language, reading and a social group. Even now that lockdown is over, and a new system supposedly in place, he still only receives supports from the branch, and when he turns 18 and leaves the educational system, the only supports that will be available to him are likely to be from Meitheal 21 (where the Tipperary DSI branch is based) and the adult services provided.
“This year, fundraising from Tour de Munster will primarily go towards educational tutoring, developing adult services and providing access to programmes. We are so lucky to have a committee of parents who are currently working hard to develop programmes for young adults, both educational, employment-focused, developmental and social. But these programmes cost money and it is the funds raised by the Tour de Munster that will make them happen.
“I want Charlie to be able to have his own friends, his own place to socialise, and continue to develop skills and learn all through his life. If this is to happen, then the fundraising from the Tour de Munster is going to be key to developing this.”
Thanks to his loving family and the support offered by DSI, Charlie is a happy and secure child and Cora says the annual cycle event does more than just raise funds, it also helps people to ‘see’ others with conditions like Down syndrome and this, she feels, is just as important.
“Charlie has a great sense of humour and is very lovable, which is exactly what is said about people with Down syndrome,” she says. “He is energetic, active and mad for devilment. He also loves playing with his siblings and they love him too, and generally get on very well. We also have a large extended family of cousins on both sides as we are both from big families, and most of Charlie’s cousins are of a similar age, with several of them in the same school, so they are a great back-up and to see them all together is an amazing thing.
“He also loves school and has an amazing school community who you just know are rooting for him and genuinely like and respect him. We always, from the time he was born, brought him out in the community and there is a general sense of belonging within our parish. So while fundraising is the primary benefit to the Tour de Munster, there is also another aspect of it, which is very important to us.
“The event, and the build-up to it, with every county doing a ‘warm up cycle’ in the months leading up to it, really brings awareness around our members to the front of peoples’ minds. There is always a huge response on the streets of the local towns, where the tour passes. I’ve been on bucket collections and have stood on the side of the road watching all these cyclists zooming past, and the support received from the communities around the tour route is amazing.
“When Charlie was born, I practiced trying to say ‘this is my son and he has Down Syndrome’ into a mirror without crying. Now I stand in the middle of a supporters crowd with my arm slung around his shoulder and smile as I say ‘this is my son and he has Down Syndrome’, and Charlie is standing tall beside me. "
“When Charlie was born, I practiced trying to say ‘this is my son and he has Down syndrome’ into a mirror without crying. Now I stand in the middle of a supporters crowd with my arm slung around his shoulder and smile as I say ‘this is my son and he has Down syndrome’, and Charlie is standing tall beside me. I know that people are smiling and proudly supporting us back and that, for me, is what Tour de Munster is all about.”
It is estimated that there are approximately 7,000 people in Ireland with Down syndrome. With a national office in Dublin and 25 local branches around the country, DSI provides support for them and their families, working hard to make sure that ‘people with Down syndrome get the chance to live good lives’.
“We help people of all ages, from the early years, through primary and secondary school, college, working life and getting older,” says Cathy Grey, head of communications and public affairs at DSI. We are a community of people here to support you through all the ups and downs of having a baby with Down syndrome and funds raised as a result of Tour de Munster support the six Munster branches of Down Syndrome Ireland, enabling each branch to subsidise a number of vital services for their members.”
For more information and to donate to Tour de Munster, visit downsyndrome.ie