Cliona’s Foundation - helping parents cope with their child's hospital expenses

It all adds up – petrol, parking, food while at the hospital. If you’ve other children, then there’s paying for someone to mind them and that’s when the costs ramp up even more. Then there’s time taken off from work to be at the child’s bedside and a car to keep on the road for all that extra travelling.

All these demands can put huge strain on the family purse.

€100 a day is average cost

Brendan Ring of Cliona’s Foundation says the average cost per day for parents is €100.

“We’ve always thought that, as a minimum, €100 a day is spent on a visit to a hospital. You’re on the phone constantly, maybe you’ve other children to take care of, the parking is very expensive, then there’s petrol or diesel and food. It’s an awful lot of money for anyone to find on a regular basis.”

Brendan, along with his wife Terry, set up Cliona’s Foundation in memory of their daughter Cliona, who died, aged 15, of an inoperable brain tumour on 2 December 2006. They saw how financial stress affects families.

“If you’re a low-income family, it’s very expensive,” he says.

“What we’re seeing is that families who you would have thought might not need financial assistance, are now coming into a category where, although mum and dad are working, they are still struggling with finances day-to-day, particularly if they have a child that has to spend a lot of time in hospitals.”

Expense beyond many couples - €4,000 on parking

“When you boil it down, that kind of expense for looking after their child is beyond many couples really. In the early stages, family often help out. But if the illness goes on for months and years on end, financial difficulty arises.”

€1m has now been raised by Cliona’s Foundation since 2007 and 300 families have been helped since then. 400 children are diagnosed with some form of life-limiting illness every year, he states.

“That’s a lot of families affected. Not all need financial support but many do. After a while, you run out of places to get help. Often we are seen as the charity of last resort because people have to contact us to try and survive. We know from talking to people we’ve helped that the money has made a big difference to them coping. Expenses can be very high over time. One family we know whose child has been sick for maybe five years, kept all the receipts for car parking and they have spent €4,000 on that alone since their child was born.”

The Ring family experienced the reality of such expense themselves when Cliona was ill for many years and attending many hospitals, including Crumlin Children’s Hospital for chemotherapy for over 18 months.

“It also meant being with her full-time in a Cork hospital in the three months before she died. Our belief, in setting up the foundation, was that no family should have to go through this financial stress when they also have the stress of their child being ill.”

Keith Duffy Foundation now supporting

Miriam O’Callaghan is patron of the charity and Keith Duffy has recently been lending his support.

“Cliona’s Foundation is unique in the sense that it provides money for non-medical expenses,” Brendan says, “but we are limited in how much we pay out by how much is donated.

“We do try to help everybody that applies. Even the smallest grant we can provide is really worthwhile. When you read back the thank you letters that people send, you’d be blown away as to how important this cheque is to them. It comes at a very important time in their lives and gets them through.”

Help afterwards is wonderful

Many parents go on to fundraise for the Foundation after their crisis is over, he adds.

“Some families who got maybe €1,500 to €2,000 would have given back multiples of that over the years, fundraising to help other families in return for being helped themselves. That’s critical and wonderful to see. We are always asking parents to be ambassadors for the Foundation, to tell their stories, so other families will be helped, though we know that, sometimes, people may find it difficult to disclose that they’ve had financial help. We would have found that difficult too.”

Demand for financial aid is increasing all the time, however.

“Starting off, we were getting a couple of applications a month – now we are getting two to three a week. Obviously, we have to do more fundraising and it does encroach on our business and personal lives. We do have people helping us out now in our office, which is but we are probably at the next level now where we need other people to do the fund raising for us because we can’t constantly do it ourselves. It can be draining and it does take a toll on oneself in a lot of different ways.”

Brendan was very vocal recently when the Irish Cancer Society announced they were going to stop their hardship grants for children with cancer.

“We came out strongly against that because we felt that it was going to mean extra demand on our Foundation because, uniquely, we provide for the non-medical expenses. They mentioned they had helped 200 children last year. The numbers are increasing all the time. It’s frightening.”

Cycle from Nantes to Lourdes coming up

Brendan is still planning fundraising events. He and 17 others will be cycling from Nantes to Lourdes from 12 June to raise more funds.

“It’s 850km over five days, so we’re asking for support for that through our online charity page.

“For people who might want to donate in a small way, they can text CLIONA to 50300 to donate €2. Everyone can help in some little way and that is very important.”

Cliona Ring was diagnosed with an inoperable brain tumour when she was eight. She died on 2 December 2006, aged 15.

“Cliona was a fantastic child,” her dad Brendan, says. “Beautiful, bubbly, outgoing… Having those eight years with us after diagnosis helped us deal with her passing, to an extent.”

During Cliona’s illness, Brendan and Terry witnessed many families struggling to meet all of the additional expenses which arise when you have a child with a life-limiting illness.

Following a lot of support over the years from their own community, the couple wanted to give something back. Their first charity night raised €50,000.

“It was then the penny dropped. We thought, why don’t we start helping other families who are struggling to cope financially when their child is in hospital, like we were?”

Tip - talk to hospital social worker

Many parents are surprised at the additional costs outside of any medical bills that occur when caring for a sick child.

A chat with the hospital social worker sooner rather than later can help you access information about subsidised meals in hospital canteens, accommodation for parents, parking, transport issues. The chat will also help you get a better understanding of your entitlements, eg a social worker can apply for a medical card on your behalf or if your child is disabled and requires a Primary Medical Cert, this can be obtained through the social worker. There may be other allowances the family are entitled to, such as Domiciliary Care Allowance.

A booklet entitled Practical Financial Advice for Parents Coping With a Child With a Life Limiting Illness is available from www.clionasfoundation.ie.

Keith Duffy

“I’m delighted to help Cliona’s Foundation with the work they do. It’s something that’s close to my heart as I have seen the financial burden on families caring for a critically ill child as part of my work with the Keith Duffy Foundation.

“My Foundation aims to provide support and financial assistance to a number of chosen children’s charities throughout the country.”

How to help

Please help this fantastic charity by raising awareness and also, if you can, by donating just €2 by texting CLIONA to 50300.

Letter from Ruby’s family

Nobody can fully comprehend the heartache and stress associated with having a child born with special care needs unless it becomes a part of your life. On 6 November 2013 it became our reality when our baby girl Ruby was born six weeks premature and missing her left arm from below her elbow and left hand, and so began a very difficult journey in our family’s life.

Five days after Ruby’s birth, she contracted invasive septicaemia and was very weak. She spent almost a month in the neonatal unit in Limerick where, thanks to the hard work and dedication of the nurses, she fought hard and to our complete joy was home just in time for Christmas.

However, Ruby’s condition is quite rare and there was very little support for us. We faced regular trips to Cappagh and Crumlin hospitals and soon found ourselves worrying about the financial burden associated with trips to Dublin, childcare costs for our other daughter, fuel expenses and, most importantly, medical expenses for Ruby’s care.

During this very difficult and overwhelming time, our only hope came in the form of financial assistance from Cliona’s Foundation.

I still vividly remember the day I received a cheque in the post from Cliona’s Foundation and the sense of relief and gratitude I felt. It reduced me to tears to think that there was someone willing to help our family and we are eternally grateful for their assistance and the work they do for all families who need their help.