THE Tour De Munster takes place from August 8 to 11 this year, with the first two days seeing the event visit the Banner County. Down Syndrome Ireland is the beneficiary of the cyclists endeavours and the funds raised make a huge difference to children’s lives, according to Deirdre Power of Newmarket, whose daughter Lucy recently finished national school at St Conaire’s.
Lucy was diagnosed with Down Syndrome in the weeks before her birth.
“From about week 28 they were getting concerned that something wasn’t quite right,” said Deirdre.
“They weren’t sure what was going on, they were talking about delivering early, and I was being scanned. They didn’t have to deliver early in the finish anyway. I was offered an Amniocentesis at week 33 which I ended up taking, they told me the risk to the baby was very minimal, the only thing that might happen was that I might go into early labour.
“Then I got the diagnosis the following week, four weeks before she was born. That allowed me the time to prepare myself, to do the research and come to terms with the fact that my child was going to be a bit different to what I anticipated.
“I don’t know that any child ever turns out to be what anybody anticipates anyway! We were going to go down a different route essentially.”
She said that knowing in advance was helpful and allowed her to process the situation a bit before Lucy was born.
“Knowing in advance meant that before she arrived I had dealt with some of the feelings I had,” she said.
“There was lots of love and laughter in the hospital the first week and lots of support. I was glad, because when you hear that news you go through a process. I didn’t have anyone in my circle or wider family with Down Syndrome and a lot of the feelings are fear based.
“My life is a whole lot richer because of my daughter. But when you get the diagnosis you don’t realise that.
“And you worry too, one in two babies with Downs have heart issues, so you worry about what are the medical things that are going to come down the road.
“Lucy has had some medical issues, but nothing insurmountable.”
Having finished primary school, Lucy will go to St Anne’s in Ennis next.
“She loves life, she lives in the present, full of fun, a very sociable character,” says her mother.
Of course life with Down Syndrome is not easy and she has had a series of issues to deal with.
“Children with Down Syndrome have low muscle tone and it can impact in different ways,” said Deirdre. “She had a lot of speech challenges, because it affects the muscles in the mouth.
“For her speech to be clear she has had to do speech and language therapy for the last seven years and it has really helped.
“She has a huge range of language now and her speech clarity is way better than what it was. When she started primary school people couldn’t understand her really, her peers didn’t know what she was saying.
“When I found out I was going to have a child with Down Syndrome and having done a bit of research I thought that the one thing I wanted was to make sure she could communicate with the world. Sometimes that can be quite a big challenge because of the low muscle tone and the challenges that brings for speech. But she’s doing great.
“She would have had chronic chest infections and things like that, but it’s all managed now.
“She got alopecia unfortunately and again there’s a higher incidence of that in the Down Syndrome community. She got that in 2019 and literally all her hair fell out in a few months.”
The funds raised from Tour de Munster help provide activities for children like Lucy, which aren’t as readily available as they are to others.
“It can be challenging at times, Lucy is a bit different, we live in an estate and I couldn’t let Lucy out to play in the estate like all the other children and that can be hard. But the funds from this make such a difference to the kids,” said Deirdre.
The money that is raised for Down Syndrome Ireland by the Tour de Munster does make a huge difference, she says.
“Lucy had the swimming lessons, we do speech and language therapy twice a month and the money raised from Tour De Munster goes toward supporting that sort of stuff,” she said.
“She’s learned to cycle, Down Syndrome Clare organise a cycling club, they do an eight week programme.
“She is in an athletics group on a Saturday morning and they contribute to that. She’s very sporty, likes to be on the move all the time, she’s doing gymnastics now on a Sunday morning.
“The cyclists do a huge amount of training and the funds that they raise, whatever is collected goes back to the branches in Munster and all that money goes towards the type of things we are talking about. There’s an older group that does bowling once a month through Down Syndrome Clare, that’s organised for them as well, and that’s a bit of social interaction.”
Owen Ryan has been a journalist with the Clare Champion since 2007, having previously worked with a number of other publications in Limerick, Cork and Galway. His first book will be published in December 2024.