Dream of dedicated centre for people with Down Syndrome

ON a quiet September evening in 2016, Aoife Leonard gazed into the eyes of her first-born in the maternity ward of Mayo General Hospital, writes Jemima Burke.

This child she had carried was finally here, in her arms, a tiny piece of humanity. As the medical team left the room, she and husband Adrian came together to bond with Louis, their baby.

Aoife remembers that moment like it was yesterday: “I looked at Louis and thought, ‘I can see it in his eyes.’ I turned to my husband and said, ‘Do you see there is something with his eyes?’ He said: ‘I can.’”

‘It’ was Down Syndrome. Despite a clear brain scan and heart echo test, as well as a lack of ‘soft markers’ that usually indicate the syndrome, the results of a blood test finally revealed, after a 10-day wait, that Louis Leonard was born with Down Syndrome.

The first month passed in a blur for Aoife: “It was a massive shock, but we pulled ourselves together fairly quickly because, at the end of the day, we love our baby … and he needed us. We couldn’t afford to fall apart.”

In Ireland, about one baby born in every 600 has Down Syndrome. Although Aoife was familiar with it (her mother has two cousins who both have sons with DS), coming to terms with the news was still a tremendous challenge: “I’d say I knew about 12 other girls who were pregnant at the same time as me. I thought all those things like ‘why was it my baby?’”

Some 21 months later, Aoife cannot express how much her life has been enriched by Louis. If she could have given herself some advice at the start it would be: “Don’t be afraid. I was so afraid at the start because I didn’t know what was ahead.”

Born with two holes in his heart, these closed of their own accord without any need for major surgery. For Aoife, her baby Louis is all and more that she could wish for.

“He’s the heart of our family,” she smiles. “Yes, there are bad days. There are days when you wish your child didn’t have to work as hard to reach a milestone in comparison to a typically developing child but thankfully the good days outweigh the bad days. As Louis reaches each milestone there is always a big celebration.”

 

Swinford centre

Aoife is one of over 150 members of Down Syndrome Mayo which currently rents out a space in Moneen Industrial Estate in Castlebar.

Their dream is to open a dedicated centre for children and adults with Down Syndrome in the west of Ireland.

The late Máirt Campbell, who passed away in April of last year, donated his home in Swinford for this purpose. The house is a four-bedroom bungalow strategically located outside Swinford, just off the N5.

Campbell’s nephew, Enda, who has an eight-year-old son, James, with Down Syndrome, articulates high hopes for the new facility: “It will be a lovely legacy for Máirt, something he will be very proud of.

“He wanted to see people with Down Syndrome getting great benefit from it, whether in terms of training or respite. Hopefully, we’ll see that realised.”

According to Aoife, whose husband is heavily involved in the planning, the aim is to convert the house into the main regional centre that will service all of Connaught. “At the moment we are concentrating on fundraising to convert the house into a commercial building which will hopefully provide a skip programme for the under 5s, speech and language therapy, occupational therapy and physiotherapy.

“It will also provide workshops and training for the adult members and a Latch On programme which is to help prepare adults for the workplace.

“It will be our main base hopefully in Mayo and will serve the whole of Connaught. We have estimated that the conversion will cost us in and around €150,000. As of now, we have no centre here in the west at all.”

Down Syndrome Mayo receives no government funding, but relies solely on fundraising, donations and the goodwill of people and businesses. Chairperson Angela Black and the entire team are thankful to Rhatigan Architects from Sligo, and others who have come forward, for offering their services for the project.

While raising their child to be as independent as possible, the Leonards’ main fear is that they will not always be here with Louis.

“I pray that society will be good to him,” says Aoife.

 

'A gift'

This level of care and concern is reflected in parents and siblings of children with Down Syndrome all across Mayo where relationships tend to be very strong and enduring.

Rocky O’Donnell (35), a boxing coach from Ballina, is brother to Ian (32). Ian was born with Down Syndrome, an infectious laugh, and a strong personality. Rocky moved back home to help after his father passed away four years ago.

Sometimes the needs are practical: “Ian needed a male figure around him for doing basic things like showering and stuff like that.”

Speaking of the joy his brother has invested into his life, Rocky often says that he needs Ian more than his brother needs him. He describes Ian as ‘a gift’ and ‘a blessing to two wonderful parents’.

He will never forget how his father called him to his side as a young boy and asked him never to let Ian out of his sight.

“I remember about this time of year, as a young boy, going out to play football at the nearest pitch. Ian wasn’t great on his feet … He was crying as I left with the boys to play.

“I remember my father, who was a quiet man, saying, ‘Come back here for a minute. I want to talk to you. Don’t be showing off in front of your friends. Take him with you wherever you go.’

“From that day on, he’s never left my side.”

When Rocky left his house for the polling booth this May he didn’t need a long time to make up his mind on which way he’d vote in Ireland’s abortion referendum.

“I looked at the statistics in other countries. In England, you can find out if you’re having a baby with Down Syndrome and abort it. There are only several thousand kids with Down’s Syndrome in Ireland. The population is 4 and a half million.

“It’s actually a gift to have a child with it. I can speak from experience, and the joy Ian has brought into my life.”

Aoife Leonard also voted no. She was part of a closed Facebook group online for mothers of babies born after 2013.

She recalls the months leading up to the referendum this May as very difficult: “It was a very hard time for all the mums in the group. It was very upsetting …”

“I remember the day the voting came. I thought, if I went out and voted yes, I would let Louis down. He could be the last of his generation. Are we going to wipe them out?”

“I think we are going down the wrong road. I think it’s eugenics. I think nobody has the right to play God. There’s an extra piece of Louis, an extra copy of chromosome 21, but we’ll bring him up as we’d bring up any baby. I voted no.”

Aoife is concerned that mothers are and will be systematically encouraged to go down the route of abortion once a pre-natal diagnosis for Down Syndrome is given. “I know of a mum who, when she found out, the consultant tried to sway towards a termination. That was here in Ireland even before the referendum. The floodgates are open now and I think it will be abortion on demand.”

From toddlers to teenagers to table-tennis enthusiasts like Rocky’s brother Ian, Down Syndrome Mayo is a group bursting at the seams with life, joy, and happiness. No one can stay long without their spirits being lifted.

“It’s some world,” laughs Kath Malone from Westport, whose daughter Caitlín just sat her Junior Cert in Sancta Maria College in Louisburgh. “You go places you never thought you’d go! My daughter is here for a reason and she touches a lot of lives. She has opened up worlds for me.”

Children and adults with Down Syndrome show us a fresh perspective on life. They teach us values such as empathy, kindness, and honesty. Most of all, they are loved as cherished members of society. The parents and family who care for them are a testament to that enduring bond of love that can never be broken.

 

To find out more about Down Syndrome Mayo, look up their Facebook page https://www.facebook.com/DownSyndromeMayo/ or call (094) 9026703.