Down Syndrome Galway raise vital funds with Go-1-Better challenge

By Seoirse Mulgrew

A Galway charity has been forced to “think outside the box” in order to raise vital funds during the pandemic.

Voices for Down Syndrome Galway is privately funded by parents and volunteers who have to raise money each year in order to fund speech therapists. It provides support and speech and language therapy to a number of children and adults with down syndrome in Galway.

The charity is raising funds for World Down Syndrome Day 2021, which takes place on Sunday, March 21.

Committee member and father, Rob McKune, along with his sister-in-law Karen, came up with the idea of the “Go-1-Better” challenge.

The “Go-1-Better” challenge was a virtual event that was launched in February and comes to an end on Sunday, March 21, to mark World Down Syndrome Day.

The charity’s usual fund-raising activities were halted as a result of the pandemic so it encouraged people to walk, run, cycle, or swim within their 5km in order to take part in this virtual event.

On Sunday, Mr McKune will have completed a half marathon, which is a total of 21km.

As a family, they will have raised nearly €1,600 through donations. Mr McKune’s 10-year-old niece, Chloe, has walked 210 miles in Philadelphia in the USA to raise funds.

Rob, Louise, Ethan, and Joshua McKune

Mr McKune’s eight-year-old son Joshua has down syndrome. Joshua has been in receipt of Speech and Language Therapy since the age of three.

“We think the Go-1-Better challenge appeals to a lot of people because everyone has their own challenges. If you push yourself “1 Better” you can do it and you can achieve something. Josh shows us what can be achieved, what he does sometimes is remarkable,” he said.

One in every 335 children born in Galway has down syndrome.

Mrs McKune described the charity’s speech and language therapy as “hugely beneficial”.

“The team at Voices also provide a lot of support with behavioural issues, occupational therapy, and physiotherapy even though it isn’t specifically their role. It’s vital that we continue this service we have with Voices.”

“The one-to-one sessions with the speech therapists are really our lifeline at the moment,” she said.

The charity must raise €140,000 per annum to provide this service. The running costs of the project are raised solely through a mixture of fundraising events and charitable donations.

“It’s not government funded so we have to then set up events every year and raise money to fund the speech therapists otherwise the kids will have absolutely no support in the speech therapy area, which is critical for kids with down syndrome as it’s one of their main developmental milestones that they struggle with,” she said.

“At the end of the day we shouldn’t have to be doing this this should be a service that’s provided by the government for our children,” she said.

Mr McKune also praised the team at Voices.

“Sonia is the senior speech therapist with Voices and her ability to work with Josh is impressive to say the least. She works with the school as well because the school aren’t receiving any other help from outside regarding Joshua’s needs.”

“The fact that there’s no support from the government is hugely disappointing,” he said.

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