FOR the past nine years, since the Beatty family received a ‘gift’ who they christened Jay, they have been working tirelessly to raise awareness of Down Syndrome.
Next Thursday (March 21) is World Down Syndrome Day and Aine, her husband Martin and their children Olivia and Jay will be doing their bit to promote understanding of the syndrome.
Aine, who set up the charity Downs and Proud, spoke to the ‘MAIL’ this week and told how Jay is flourishing in mainstream education and doing his bit to raise the profile of the charity.
On Tuesday Aine will be giving a presentation at Jay’s school - Tannaghmore Primary School - where they’ll also be holding a fun day and a balloon launch.
“The purpose of the presentation is to raise awareness about Down Syndrome,” she said.
“Through Downs and Proud we want to increase people’s understanding of Down Syndrome.
“Jay’s friends all know there’s something special about him and that he takes a wee bit longer to do some things and that’s good because it’s important for them to be aware of it. With that awareness comes understanding and acceptance that makes Jay part of the crowd.
“The girls all dote on him and everyone wants to be his friend. He’s a real wee character.”
Jay is in primary four at Tannaghmore having spent an extra year in Drumnamoe Nursery School.
“Drumnamoe gave him the best possible start in life and Tannaghmore have continued where Drumnamoe left off.
“We were advised Jay was suitable for mainstream education. This isn’t the case for everyone with Down Syndrome - in some cases they’ll go into special education.
“We take Jay’s education year by year. If they think he is ready to go up a year that’s what happens.”
Jay’s teacher at Tannaghmore is Miss Murtagh and his assistant is Seaneen.
“His progress has been fantastic because you get one-on-one work as well as being involved with the other children,” said Aine.
Jay’s sister Olivia (14) has also been key to his development.
Aine said: “His sister is brilliant with him. There’s a nice age gap between the two of them.
“They’re flat out on the iPad downloading apps to help Jay with his learning.
“Olivia also does our Twitter page and helps with the website.”
Jay, who goes to Coalisland for speech therapy, is mascot for Celtic Club (Lurgan No 1).
Aine said: “His speech has come on really well and he’s full of confidence. He does the team talks before the matches. No one is laughing when he’s doing the team talks. It’s all very serious.”
Aine’s husband Martin commented: “Recently there has been so many negative reports regarding Down Syndrome and people stating that children diagnosed with Down Syndrome should be aborted to ease the burden on the economy and while we respect everyone has an opinion it is very difficult to stomach these comments.
“At Downs and Proud we are a very positive group and ask only that our children be given every opportunity to live a full and happy life and to be included not excluded.”
Aine added: “I just think it’s very sad that people have commented on something that they don’t know very much about. What we are trying to do in Downs and Proud is take that stigma away.
“I saw a video of this young man with Down Syndrome who has set up his own restaurant called ‘Hamburgers, Hotdogs and Hugs’. When he was being interviewed he was talking about people with Down Syndrome he said, ‘We are a gift’.
“I think that’s a perfect description. People with Down Syndrome give so much back.”
She added: “I didn’t know my baby had Down Syndrome when I was pregnant. Even if I’d known it wouldn’t have made a difference.
“A week after Jay was born he needed open heart surgery. Once you’ve seen him go through that Downs doesn’t even come into it.”
World Down Syndrome Day takes place on Thursday, March 21. The date 21-3 has been chosen as children who are born with Downs Syndrome have a third 21st chromosome.
Aine, who has completed a counselling course, laid the foundations for Downs and Proud shortly after Jay was born.
She said: “When Jay was born with Down’s syndrome, I found that my local community was lacking a support group. As time moved on and more children in my area were born with Down syndrome, I knew that we all had common ground and felt we could benefit from sharing our experiences and act as support for each other.
“For new members we send out a ‘Buddy’ pack full of information for new parents.
“Everything is accessible through our website (www.downsandproud.com) which was launched officially in February.
“On the website it says new members are welcome from Lurgan and surrounding area but it doesn’t matter where people are from. If they can travel here they’re more than welcome.”
As well as the website Downs and Proud’s Facebook page has over 3,000 followers.
The group are up for a Pride of Craigavon award and following World Down Syndrome Day they will be holding a fundraising event on April 6 in the Woodville Arms in Lurgan.