'I'm giving back now'. Cork teen to walk Camino for Cliona's Foundation fundraiser

FAMILIES of children who have long-term medical conditions are subject to thousands of euro in hidden costs, a Cork mother has said.

Cliona’s Foundation, set up by Brendan and Terry Ring after the loss of their daughter, has supported more than 1,700 families in these situations, including 233 in Cork, providing direct financial assistance that helps parents to remain close to their child during treatment.

Susan Daly from Cork told The Echo: “In 2013, my daughter Olivia was diagnosed with a very rare liver tumour. It was a big shock, she was just four years old at the time and it sent us on a very hard journey for the next four years.

“She was being treated in Crumlin hospital in Dublin and King’s College in London until she turned eight, regular long admissions for treatments and surgeries.”

Ms Daly said her son Christian (20), who is four years older than Olivia, was born with a condition involving fluid on his brain, and had to undergo multiple major surgeries from birth until he was three-and-a-half.

Though the two conditions were completely unrelated, she said: “We thought it was over, and then this happened to our healthy baby.

Income halved

“I literally had to stop working overnight, my husband Colin would stay in Cork with Christian, trying to keep routine going for him with school, and he had to keep working because we needed to pay our bills. Your mortgage and utility bills don’t stop, and your income is halved.

“The separations were really long and frequent, Olivia’s hospital stays could be anything from a week to four-and-a-half months, which was the longest. It took a massive toll emotionally and financially. The financial cost is what I wasn’t prepared for.

“Until you’re in that situation, you cannot comprehend the financial devastation it causes,” she said, explaining that she slept on a mattress on the floor of Olivia’s hospital room in Crumlin, as parents’ accommodation was very difficult to come by.

“You have to buy food and sustain yourself. In Crumlin, the huge cost is the parking. We might drive up Monday for what’s meant to be a check-up then you’re told you’re not going home and you have to leave your car in the car park for weeks, it would cost hundreds.

“We’d have to get hotels if we had to be up the night before for an early procedure, and in the UK there’s theatre waiting lists so you’d have to be in the country but not knowing whether she was going to get a call to come in,” Ms Daly said.

“Her immune system was wiped out with the illness so we couldn’t take public transport, we’d have to get a taxi from Heathrow to the hospital which was €120 each way.”

Costs mount up

Ms Daly said the treatment abroad scheme goes towards these costs, but only covers flights. Everything else mounts up.

“Those four years, myself and Olivia were over and back eight or nine times a year.”

She found out about Cliona’s Foundation from a nurse in Cork University Hospital (CUH).

“I was in a daze, we’d just got the diagnosis and she said trust me, you’re going to need this, you have a long road ahead of you. She helped me fill out the form that day, which was so kind of her.”

Ms Daly said she forgot about the form, but shortly after she got a cheque for €1,500 in the post and a lovely letter from Terry and Brendan.

“I actually burst into tears. It wasn’t just the financial support, you feel like somebody understands, you’re not really alone. It meant an awful lot, so I stayed in touch.

“A few years later, they were looking for someone to represent families on the board as a volunteer and I was honoured to do it.”

Ms Daly met other families in the same situation who said they felt isolated and forgotten about by the government, and told them about Cliona’s Foundation

“We almost lost our home. You’re really left to fend for yourself, we were under so much pressure to pay our mortgage but money was going to Olivia’s care, everything else was secondary.

“I’d be at Olivia’s bedside, or waiting to see if she would come through a surgery and you’d be getting calls from utility companies saying you need to pay this, and I’d be saying ‘I can’t, I don’t have it’.”

Isolation

Ms Daly continued: “400 families every year get this bad news — your world falls apart, feelings of helplessness and isolation overwhelm you.

“It’s so hard to even get up every day and do basic things, to try and pretend everything is ok. As a parent, you’d swap places with your child in an instant, but you can’t.

“Some families aren’t in the frame of mind to be able to communicate and that’s fine, there’s no strings attached, but I found a bit of solace in being able to reach out to Terry and Brendan.

“They are incredible people to take their loss and turn it into something so wonderful. We just try to get the word out to people, say if you ever need us — please God you never do —we’re here.”

Olivia is now 16 and in transition year, and though she has medical issues still, “she’s a very resilient and determined young lady, and faces it head on”.

She recently decided she wanted to walk the Camino at the end of May and raise money for Cliona’s Foundation, telling her mother: ‘I think it’s full circle. They helped us, and I’m giving back now.”’

Ms Daly said: “I’m proud of Olivia. She’ll be walking 110km and away from home for a week, and it’s difficult for me to let go, but it’s important that she makes the most of all the opportunities that are out there.”

You can donate to Olivia’s Go Fund Me at: 

https://www.gofundme.com/f/olivia-walk-the-camino-for-clionas-foundation.