Arlene Harris talks to the founders of a charity set up to help ease the financial stress parents with children with life-limiting illnesses can experience, added to the pain of watching their child suffer.
Cliona Ring would have celebrated her 26th birthday this year. But fate delivered a cruel blow to the Limerick girl when she developed an inoperable tumour and tragically died when she was just 15 years old.
Her parents Terry and Brendan were devastated by the death of their young daughter but instead of giving in to the obviously crippling grief they and their son Colm were experiencing, channelled their energies into creating a charity in Cliona’s name to raise funds for families of other terminally ill children around the country.
Because they knew that despite the sheer enormity of the stress experienced by parents of a child with a life-limiting illness, the day-to-day finances and practicalities still need to be addressed, and this adds to an already emotional situation.
Set up in 2007, Cliona’s Foundation provides financial assistance for the non-medical expenses which families have to cover while trying to cope with the reality of caring for a child with a life-limiting condition.
On June 3, a memorial cycle took place in Limerick to raise funds for the charity and founder Terry Ring says they aim to do all they can to help families coping with a sick child.
“We have come across a very large number of families who have to go through huge financial worry at the same time as watching their child suffer,” says Cliona’s mum, Terry.
“All parents want is to be at their child’s side as they go through this enormously difficult time, so they shouldn’t have to worry about taking time off work or about finding the money for a childminder for their other children, while they travel to and from hospital,” explains Terry.
At any given time, there can be up to 5000 critically ill children in the country and while a parent’s first priority is being there for their child, the bills can and do mount up and this is where the foundation helps out.
David and Mary Crowe also lost their daughter to a terminal illness and say that while nothing could ease the burden of watching their child die, the knowledge that some of the everyday bills were being taken care of, was a huge weight off their mind.
“When your child is seriously sick, you really don’t give a toss about whether the electricity bill is paid or not, but the reality is that if it isn’t then the rest of the family will suffer further as a consequence,” says David.
“Our daughter Sarah was diagnosed with a life-limiting disease called Alpers when she was almost three years old, and doctors gave her just a year or two at the most to live. But they weren’t prepared for her determination and she actually battled on for almost ten years.
“Every minute we had Sarah with us was a blessing but she finally passed away in March 2016 when she was 12 ½ — Mary and I and our son Jimmy were utterly devastated.
“I had given up work to take care of her, while Mary worked harder than anyone could imagine, but still the bills mounted up.
“My sister applied to Cliona’s Foundation for help and although I didn’t want her to (as I didn’t want to admit that my daughter was dying), she told me that she had already put in an application for a donation — and I was so grateful when the financial help arrived as there were times when we really couldn’t have coped with the unpaid bills on top of everything else.”
David, who is also from Limerick, says with National Carers Week coming up on June 12, it is vitally important that people recognise the work that both the Care Alliance and Cliona’s Foundation do for families all across the country.
“There are so many people in the same situation that Mary and I found ourselves in for years, and it is disgraceful that the Government does so little to help,” he says.
“They don’t seem to realise that if the carers of the country weren’t looking after their families, it would cost the State a huge amount of money.
“We have to rely on the Care Alliance and groups like Cliona’s Foundation to help us to get by at a time when we are crippled with stress, sadness and fear for our children,” David says.
“Cliona’s Foundation do incredible work and 100% of everything they raise goes to help people like us — it’s shameful that they have to fundraise at all as the Government should be helping them to help the most vulnerable people in our country.
“ Mary and I have worked all of our lives and yet, we had to fight tooth and nail for any kind of help when we needed it most.”
Without a Government grant and relying entirely on donations, Cliona’s Foundation has helped over 400 families to date — and Terry Ring says it hopes to continue.
“We believe that no family should have to face any added financial stress, when already struggling with the nightmare, devastation and trauma of having a seriously ill child,” she says.
“The ordeal of a child’s grave illness or injury tests families far beyond their endurance, taking an enormous toll financially, emotionally and physically.
“And while we cannot cure a child, we want to help parents cope and soften their heart-breaking journey, by uniquely providing financial assistance to families, who have exhausted all other resources,” explains Terry.
National Carers Week takes place from June 12.
For more information on the wrok of Cliona’s Foundation click here.
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