Helping the ‘forgotten families’ of ill children with non-medical expenses

Brendan and Terry Ring didn’t plan to establish a national charity in memory of their daughter but they did want to support other families who were treading the same path of serious childhood illness.

Now their Limerick-based Cliona's Foundation has been going for as long as the lifespan of the girl it's named after – 15 years. "There was never really meant to be a charity or a foundation," Brendan explains. "It was just that we wanted to help a few people back 15 years ago – and it hasn't stopped."

For eight years, from when Cliona was diagnosed at the age of seven with a brain tumour, they had experienced how non-medical costs relating to a child’s illness mount up and they saw the financial toll that takes on families. The couple wanted to try to ease that burden for others by fundraising to subsidise the exceptional expenses.

If you’re struggling financially in those circumstances, there are two things that can happen, says Brendan. Firstly, it may mean you can’t afford to spend a lot of time with your child in the hospital, but, secondly, “what happens for sure is that your other bills at home, and the siblings, all get neglected because it is a family problem – it affects everybody in the family”.

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‘Never-ending cycle’

In a household of two working parents, almost inevitably one income is lost as that parent becomes a full-time carer for the sick child, whether in hospital or at home, and that’s before all the associated costs of travel, accommodation, eating “on the go”, car parking, care of siblings etc start to accumulate week in, week out – in some cases going on for years.

“We call them the forgotten families. These people are racking up expenses and it’s creating fierce trouble within the family unit itself; stresses on relationships, relationships between siblings and parents. It’s a never-ending cycle.”

He recalls how their own lives were transformed in the space of one weekend after Cliona went to school on a Friday, in their eyes perfectly well, but by Sunday evening she had been diagnosed with an inoperable brain tumour. On the Monday morning, Terry had to ring her employer to say she couldn’t go to work. She never returned.

Cliona had a low-grade astrocytoma, a slow-growing brain tumour with a relatively favourable prognosis. Brendan remembers taking a call from her oncologist during a business meeting and asking, “Will Cliona see adult life?” The consultant’s reply was: “We expect her to . . . ”

Unfortunately, Brendan continues, “the tumour got nasty at the very end and took her life” – at age 15 in December 2006. It was only the previous summer that they were told the younger of their two children was going to die. “We didn’t believe it, we couldn’t get our head around it – we never did really.” Looking back, he thinks it was better they didn’t know up to that point.

“She was very brave and kept us going. It’s amazing when you do meet these children. There’s something that little bit special about them, as if there is a reason behind all of this, whatever it is.”

As the owner of a successful design, print and packaging business, Brendan and his wife were able to suspend their lives and spend those last five months with Cliona – “both of us, without having to go to work. How lucky were we?”

It was knowing that most other parents of seriously ill or dying children are not as fortunate that drove them to try to address this hidden issue. Families of children with a terminal diagnosis are already dealing with emotional devastation and grief; financial stress on top of that can break them.

‘Our goal’

“It’s awful,” he says simply and their aim all along has been to highlight the problem. “It’s not about us, it’s not about Cliona.” Although of course, he acknowledges, it wouldn’t exist without them having had her in their lives for 15 years.

People think this sort of financial support is only necessary for low-income or no-income families, he says, but that’s not the case. The financial repercussions of having a sick child can also be huge for two parents on, say a salary of €50,000 each, with a mortgage and lifestyle based on that joint income.

Research conducted by Trinity College Dublin showed that, on average, families need €10,000 a year to cover the non-medical expenses associated with having a hospitalised child. "Our goal in the next five years is to be able to give every family that applies to us €10,000."

The Rings were warned at the outset that a lot of charities are started in the wave of emotional reaction to a death. “Did we question ourselves? Of course we did,” says Brendan, a day before the January board meeting to approve cheques for 15 families, bringing Cliona’s Foundation past the milestone of 1,000 families helped since its inception.

A day doesn’t pass without them thinking of Cliona, yet emotion alone would not have kept the charity going. They are “blessed” in having financial resources to help sustain it and a wide network of business associates who support the charity in different ways.

The couple also get “massive satisfaction” from being able to help others after the experience of losing Cliona. So often, he adds, they are thanked by families not only for the cheque “but that we know and understand what they’re going through”.