‘We’d be lost only for the Down Syndrome Centre Cork’

THE smiles are always contagious and the laughter infectious at the Down Syndrome Centre, Cork.

“Freya has benefited greatly from the Down Syndrome Centre Cork,” says dad Cian Desmond, who is the organiser of the Challenge 21 fundraiser in aid of the Centre taking place on Sunday, June 18.

Freya is one of three bosses.

“Katie and I have three bosses who are all strong-willed!” says Cian, laughing. “Freya, aged six, is in the middle of Luke, aged eight, and Adam, aged three.

“Our eight-year-old has needs, our three- year-old has needs; Freya has specialist needs. The Down Syndrome Centre Cork provides those needs.”

Cian describes his fun-loving daughter.

“She is a happy, independent, stubborn little girl who loves singing and dancing - and handbags!

“Freya loves going to Ballygarvan National School with her big brother, and she loves her teacher, Miss Connolly, and her SNA, Moira.”

Cian says the Challenge 21 Fundraiser was a resounding success last year, in its inaugural year.

“The day was a huge celebration,” says Cian. “The whole community was behind the charity event. From multi-nationals to corner shops, and over 300 people were involved.”

Challenge 21 is a non-competitive charity event, 21km from Hauulbowline to Pairc Ui Chaoimh. Participants can pick how to complete it - by walking, jogging or running. Money raised will go towards supporting vital services for over 150 children with Down Syndrome and their families in Cork.

The 21km symbolises the extra chromosome in position 21 that characterises the genetic condition that is Down Syndrome.

The popular event can be a family affair.

“My parents and Auntie Mary were at one of the water stations along the way giving out water and snacks to the participants (last year),” says Cian.

“Community groups like Men’s Sheds, the Refugee Centre, Forge Hill, Tidy Towns Committees and the Direct Provision Centre all came on board to help with stewarding.”

It was party time.

“There was a festive atmosphere about the whole thing,” says Cian.

Did he take part?

“I was running around like a blue-assed fly!” he replies.

“Katie and my extended family took part and they all thoroughly enjoyed it. Everyone involved felt exhilarated and it was great for parents to enjoy a day out together.

“Following a scary diagnosis, parents often feel isolated. So it is great to have a peer support group for parents, especially in the early days.”

With great support behind it, Challenge 21 will only grow in popularity.

“We hope Challenge 21 will be even bigger and better this year. It is invigorating to get involved,” says Cian.

“Afterwards, everyone young and old are invited to the Blackrock Market for some family fun. It is a great day out.”

Cian says that the Down Syndrome Centre, Cork, provides vital early intervention services for children with Down Syndrome.

The Centre is solely reliant on the generosity of the public and local businesses to stay in operation.

“It provides the scaffolding around the children so that they can thrive,” explains Cian.

“The centre is a home away from home. Often, we are familiar with clinical and medical settings. The centre isn’t like that. It is comfortable, cheerful and colourful.”

The Down Syndrome Centre Cork offers vital early intervention for some amazing little people, providing them with a place to thrive and offering support to parents of young children with Down Syndrome.

“If us parents didn’t fundraise and advocate for our children, all the vital services would stop if no-one was willing to do the work,” says Cian.

“We have a very active committee who are parents and who volunteer their time to fundraise and advocate for their children. This isn’t always easy for people with young families and a full-time job. But we have no choice, otherwise the centre would shut down.

“Regular early intervention is vital for children with Down Syndrome. The lack of services is an extra burden on parents who have to do this. They put their life and soul into their children. Parents with children with Down Syndrome should be getting the supports we need. Instead we have to fight tooth and nail for them,” says Cian.

“There is no provision of services in Cork. The public health system can involve a wait of up to six years to access services. Early intervention is key; otherwise, the children can regress which would be a disaster.”

A group of eight parents weren’t going to let that happen.

“The centre was set up in 2017,” says Cian.

“It was set up by parents who had children with disability. It was a unifying thing. People gave of their time to make it work; for their children to reach their full potential.

“At the centre, the children avail of speech and language therapy, occupational therapy, physiotherapy, social groups, sibling workshops, parent and baby classes, baby yoga, and networking events for their parents. The Play, Achieve, Learn programme demonstrates to the children how to participate in the classroom so that they are ready to go,” says Cian.

“Things like where to hang your coat, where to put your lunch box, waiting your turn, and other key skills. The SKIP programme is an early intervention programme for children from zero to five with Down Syndrome. The programme is play-based and it targets all areas of each child’s development, i.e, speech and language, fine motor skills, gross motor skills and most of all, social skills.”

The aim of the SKIP programme is to give the children opportunity to congregate and to learn from one another and experience specific development intervention geared towards their particular needs.

Hugo Canty, aged five, is a sociable little fellow. He and his family also access services at the Down Syndrome Centre Cork

“We find the centre amazing,” says mum, Jennifer. “The Early Intervention programme is really wonderful. We are so grateful to have the Centre as we have no access to services in Cork. We’d be lost only for it.

“There is always new groups to join and Hugo gets great benefit from the speech and language therapy and from the occupational therapy available at the Centre.

“Hugo loves going to the Centre and joining in celebrations for birthdays. He has two older sisters, Jessie and Kate. They call him ‘Boss Baby’ because he rules the roost!

I remember arriving at the centre early one day and I drove past it,” says Jennifer. “I went to Dwyer’s to get a coffee and Hugo went ballistic and started crying because he thought we weren’t going in! Every time we arrive he runs to the door. The centre is a home away from home. And Lisa, the manager, is a god-send. We are very lucky. We just love it.”

Jennifer took part in Challenge 21 last year and will do so again this year.

“I’m a member of Togher Athletic Club. My husband, Paul, and loads of pals are joining in this year. Everyone is great to support.”

Joey Corbett, aged 4, loves joining in the activities at the Down Syndrome Centre Cork.

“He loves going there and meeting up with his buddies,” says mum, Pamela.

“He sees all his friends and he just loves it. Joey is very social and he loves going on play dates. It is important for him to have connection with his peers.

“Joey is involved in the SKIP programme and he avails of the vital therapies provided at the Centre,” says Pamela.

“We are so lucky to have the Centre on our doorstep and so lucky that the parents keep the doors open.”

Joey’s mum is sociable too.

“I made friends with other parents who use the services of the Centre,” says Pamela.

“It is great to be around people who understand.”

Pamela and her husband, Eddie, took part in Challenge 21 last year.

“It was a really enjoyable day out,” she says.

Celine Dineen, whose daughter Lucy, aged seven, attends the centre, agrees with Pamela.

“Challenge 21 was lots of fun,” says Celine. “It was both challenging and rewarding. This year my sisters are getting involved and family members and friends.”

Lucy made great friends through the SKIP programme.

“She has four best pals and they still meet once a week,” says Celine.

“Lucy absolutely loves the Centre.”

Olympian walker Rob Heffernan is the ambassador for Challenge 21.

“He is brilliant,” says Cian.

“The amount of energy he has is amazing! He is so generous with his time. Rob is a great guy.”

Hundreds of guys and girls will step out on June 18 in aid of the Down Syndrome Centre Cork.

Cian explains how the fundraiser will work.

“Those that participate in Challenge 21 are asked to aim to raise €21 from 21 people before walking the 21 km.

“The funds raised support early interventions like speech and language therapy and occupational therapies plus ongoing supports for young children with Down Syndrome and their families.”

Whether you choose to walk, jog, or rum, every step will make a difference for the Cork-based charity, and you’ll be spurred by the great company and fantastic finish line party.

Cian adds: “It is great to see everyone getting behind our kids and we are really looking forward to the walk along Cork harbour.

“Come along and join us. It’s a great day out!”

For more information about the Down Syndrome Cork centre, see website: https://www.downsyndromecentre.ie/dsc-centres/down-syndrome-centre-cork/

The centre is based at Forge House, Forge Hill, Cork T12 F867. Contact 021-4915616 Challenge 21:

To register for the charity event, or to donate see https://C21.eventbrite.ie