Finding something to smile about
The Ring family have turned a tragedy into a way of helping others like themselves
Cliona’s Foundation is the only charity in Ireland which provides funding for non-medical expenses, encountered by families looking after children with life-limiting conditions.
“People forget about that aspect when there is a sick child involved,” says Terry Ring who set up the foundation with her husband Brendan. It was through caring for their late daughter Cliona, whom the foundation is named after, that they witnessed first-hand what these parents go through.
“It’s directly as a result of our own personal experience with Cliona that we encountered this toll, for want of a better word. at particular support is just not available. There are so many expenses and they can be crippling,” she says.
During the time they spent in hospital and through meeting parents in the same situation as their own, Terry says it became apparent that after worrying about their sick child, financial woes follow closely behind.
“We found that with all the other families the household is down one income because a parent most likely has to give up work or take a leave of absence and their employer can’t continue to pay them. It’s very difficult because you’re spending a lot of time away from home and that in itself brings expense. You’ve also got the cost of the day-to-day running of the house at home, no matter who is there or who isn’t,” she says.
“There may be children going to school, grandparents who are after stepping in. Uncles, aunts and that all costs money. People, with the best will in the world, they’ll do what they can for you but you’ll still have to put your hand in your pocket for necessary bills.”
These bills are not luxurious by any means, Terry explains. Cliona’s Foundation helps to cover costs such as rent, home appliances and other essentials – the last thing people should be concerned about. “If you’re not in a very good place about the diagnosis you have received from the medical people about your child that takes precedent and you need to have your head together to gather what the medics are telling you,” she says. “A lot of things go over your head and it’s only afterwards you remember to ask them questions, so the least thing you want to be worrying about is finances.”
Cliona’s diagnosis came as a complete shock to the Ring family as the day they found out she was ill started like any other. “When she was seven she came home from school and her eyes were a little bit crossed. I was asking her why and Brendan actually remarked ‘maybe she’s not able to straighten them?’ at morning she had actually walked into the blackboard in school and we thought that was a bit strange because she should have known that the blackboard was there. Hence, we brought her to the doctor and they suspected there was something wrong. at was a Friday night in November 1998,” says Terry.
From there the family were sent straight to, what is now, the University Hospital in Limerick, where they discovered Cliona had an inoperable brain tumour. “She was referred to Cork that weekend and there was a further MRI taken of Cliona and that was confirmed by the neurosurgeon but he said ‘we can look at some treatment that might be available for her,’ chemotherapy or radiotherapy. She had surgery in Cork for a shunt which is a something that relieves the pressure in the brain. e following January, Cliona turned eight and she commenced chemotherapy on St Johns Ward in Our Lady’s Children’s Hospital in Crumlin. at went on for 14, 15 months which was a very expensive time,” Terry says.
Although they made regular trips to Dublin from their home in Limerick, Terry says that apart from a few ‘glitches’ and ‘hiccups’ along the way, for the next eight years Cliona had a wonderful quality of life.
“That time in our lives really put manners on us and we said, ‘We really have to grasp this and enjoy life as best we can.’ We did things with the children as much as we could. Unfortunately, the tumour started to misbehave and change in the middle of 2006,” Terry says. “The surgeons decided they needed to do something for Cliona because her quality of life would not be good afterwards. She had surgery that August and unfortunately that didn’t go very well and Cliona died in December 2006, just one month short of her 16th birthday.”
Describing that period of their lives as ‘horrific’ family and friends of the Ring family were keen to do something in memory of Cliona, to honour who she was. They compiled a CD with songs from local musicians and asked Terry and her husband, where they would like to see any funds raised to go. Terry says they knew immediately.
“We had encountered so many people throughout those eight years who were struggling with the non-medical, day-to-day expenses. It was horrendous and we said that we would like to help some of those families. We had a wonderful launch night in January 2007 and hence Cliona’s Foundation came about and ten years later it’s still here.”
In the last decade Cliona’s Foundation have helped over 400 families from almost every county in Ireland, although Terry says this figure is probably closer to 430. Incredibly, they have raised in excess of €1 million and as they do not receive any stage funding, this money has been gathered pure from fundraising events and private donations.
“It’s something we’re passionate about,” says Terry “because we know what it means to a family to receive a cheque from us. We’re Triple Locked in terms of our Corporate Governance, which is huge for us, a small little charity that was set up around the kitchen table. Worrying about money, that in itself brings pressure and families don’t need that. They’ve probably got kids at home, you’re in a hospital environment, you’ve got so much going on, you’ve got so much to take in. You’re dealing with doctors, nurses, procedures, surgery maybe, treatments, it can be a very, very scary place.”
More often than not families hear about Cliona’s Foundation through the social worker in the hospital who might be liaising with them and would be familiar with their set-up and circumstances. Sometimes it is a relative of the family who may have heard about the charity and told the parents to get in touch. “More recently we find that the families speak to each other. They say, ‘Oh well look, have you heard of Cliona’s Foundation? It’s worth enquiring with them to see if you’re entitled to funding,’” Terry says.
There are lots of ways in which people can raise money for the foundation; things such as a car wash day, a table quiz night, coffee morning and soccer tournaments are all popular fundraisers says Terry and fundraising packs will also be provided.
“It’s not huge money but it’s enough to help them. It’s just so uplifting to hear back from the families who have received cheques from us,” Terry says. “The deep hole that they were in they were going to be able to get out of that as a result of receiving a cheque. It’s very rewarding for us, we don’t deny that. It’s in Cliona’s memory and we know that this is going to do so much good for a family.”
For more information visit, www.clionasfoundation.ie