‘Without Down Syndrome Ireland support, I’d be up the creek without a paddle...’

CORK girl Aoife O’Sullivan, who is now almost 10, underwent heart surgery at just two days old. Now she is showing what a big heart she has to support her little sister.

“Aoife’s younger sister, Ciara-Jane, gets great support from the Cork branch of Down Syndrome Ireland (DSI),” says mum, Susan.

“Aoife is heavily involved in DSI Cork as well, and she volunteers with Ciara-Jane to sell booties to her classmates to raise funds for the centre.”

The O’Sullivan girls will be cheering on the Tour De Munster cyclists on their four-day, 600km cycle across six counties from August 10-13, in their quest to raise much-needed funds for Down Syndrome Ireland Munster branches and other charities.

“We’ve even adopted a cyclist!” says Susan, who lives in Tower, near Blarney.

“Paul O’Donovan is also from Blarney and we’re wishing him good luck ahead of the tour and keeping an eye on his progress over the four days. We’ve thanked him for supporting DSI Cork.”

The trio have another good reason to cheer on the cyclists as they tackle the famously steep St Patrick’s Hill finale as part of this year’s Tour de Munster charity cycle.

“The girls’ dad, Gerard, was an avid cyclist,” says Susan, who lost her husband in October, 2014, just weeks before Ciara-Jane was due.

“Gerard would be the first one up that hill. He was only 39 when he collapsed and died. It was like somebody else’s nightmare,” says Susan.

Theirs was a dream romance.

“We were teenage sweethearts,” says Susan.

The couple had a lot in common.

“We were both involved in athletics clubs. After I returned from living in Jersey for a few years, I met him at the airport. He was taking off somewhere. After that we met on a night out and we became inseparable. When Aoife was in Crumlin, I was in the Coombe and Gerard stayed in a nearby hotel,” says Susan.

The happy life Susan and Gerard dreamed of was short-lived.

“Gerard suffered a black-out and when I saw him with a bruised black eye, I asked him jokingly ‘Was the other guy worse’? But the black-outs became more frequent, even though he always came round again.

“He collapsed one night after coming off night-shift. We were pregnant with Ciara-Jane. I called the ambulance and helped Gerard sit onto a chair. He looked at me and said, ‘I’m so sorry’. He fell into my arms, and he died in my arms.

“I remember the house was full of people, my family and neighbours, the guards. I had baby Aoife in my arms. I told my mum, ‘So sorry, he’s gone’. She thought Gerard had gone to hospital. I told her he’d died. She ran down the road, Birch Hill, all upset. My sisters and brothers flocked around the house.

“My family have been a wonderful support since Gerard died. They are always there for us. Mum was there for me when Ciara-Jane was born.”

Susan was there for her daughter, Ciara-Jane, when they were separated at birth.

“When the nurse said Ciara-Jane was born with Trisomy 21, I said to her, ‘What’s that?’ The nurse said she thought Ciara-Jane had Down’s,” says Susan. “I bawled my eyes out, not because of Ciara-Jane’s condition, but because I didn’t know enough about Down’s Syndrome. I wondered if Gerard would take her. I was hysterical.

“Ciara-Jane was blue-lighted to Dublin straight away for a bowel operation.”

Two days after her C-section, Susan checked herself out of the hospital and took a train up to Temple Street to be with Ciara-Jane.

“My sister and my mum had gone with Ciara-Jane in the ambulance,” says Susan.

“For seven weeks we were a tag team. I was in the hospital Monday to Friday and mum took over at the weekends.”

The O’Sullivan girls were finally united.

“My brother and his wife brought Aoife on the train up to the hospital in Dublin. I always remember her little face smashed up against the glass as she looked at her baby sister. It was a lovely moment.”

After Temple Street linked in the family to COPE, Ciara-Jane became a member of DSI Cork at three years of age, availing of occupational therapy and speech therapy.

“I gave up my job as a legal secretary,” says Susan. “We had so many appointments to attend. Aoife was still getting check-ups for her heart every six months in Cork and Dublin.

“When I was told to get in contact with DSI Cork, it became a lifeline for us. Ciara-Jane availed of speech therapy and occupational therapy. I worked out what I could afford.

“DSI Cork relies solely on fundraising from the public, coffee mornings, and events like the Tour de Munster for instance. We’d go to the centre two or three times a week.”

It wasn’t just Ciara-Jane who benefited from DSI Cork.

“I’d go especially some days just for a laugh!” says Susan.

Aoife and Ciara-Jane have a laugh.

“They both know Lámh,” says Susan. “They have great communication and secret conversations signing to each other. Ciara-Jane doesn’t like my voice right now. She has selective hearing! Her speech is fantastic.”

The sisters are mature.

“Ciara-Jane is eight going on 20. Aoife is almost 10 and has the attitude of a teenager!” says Susan.

She, Aoife and Ciara Jane are supporting the Tour de Munster cyclists because the participants are supporting them, raising funds for DSI Cork.

“It’s funny, but Gerard was mad into cycling,” says Susan.

“He’d be after a day shift and he’d head out on his bike, doing up to 30km.”

Susan kept an eye on him.

“I’d look out the window with my binoculars and spot him across the fields coming home on the bike. Gerard loved cycling and he’d definitely have loved to have taken part in the Tour de Munster tour. Ciara-Jane wants to be like him and she’s back-peddling on her bike at the moment! She hasn’t mastered pushing the pedals all the way round! The girls love hearing stories about their dad, and I tell them all about our travels all over the world.”

Susan, as a single mother, says DSI Cork means the world to the family.

“Without their support, I’d be up the creek without a paddle,” says Susan.

“The girls love the teddy bears’ picnics and the movie days. DSI Cork not only look after the girls, they look after me too. What DSI Cork do for families is amazing. We, Granny and Grandad look after their girls too.

“It’s great to have family and extended family rally round us,” says Susan.

She has many roles every day. “Being a single mum, I’m good cop, bad cop,” she says.

Like the Tour de Munster cyclists, the O’Sullivan girls are a tight team.

“Both at the start and at the finish, the girls will be with me.”

About DSI Cork

The Cork Branch of DSI provides extra services and support to members from birth. Speech and language therapy is the primary focus over the years. DSI Cork has gone from strength to strength and now employs two full-time therapists. It runs a variety of information evenings and social events, as well as educational seminars to support families.

Phone: 021-4872680 Email: info@downsyndromecork.ie

ABOUT TOUR DE MUNSTER

Tour de Munster runs from August 10-13, covering 600km and six counties, with more than 100 cyclists taking part, all tasked with raising much-needed funds for DSI Cork and other charities.

For more on how to support the upcoming tour, see http://tourdemunster.com/