'Imagine losing your child and desperately worrying about finding the money for the funeral' - Parents of tragic Cliona (15)
Cliona Ring was born in Limerick in 1991 and parents Terry and Brendan were overjoyed by the arrival of their baby daughter, who together with their 3 year old son, Colm, made their family complete.
But seven years later, their world fell apart when their little girl was diagnosed with an inoperable brain tumour. And despite years of gruelling treatment in different hospitals around the country, their beloved daughter died on December 2 2006 at just 15 years of age.
A year after her death, the distraught family set up a charity in her name – Cliona’s Foundation – as having spent eight years in and out of hospitals, they were keenly aware of how difficult it often was to make ends meet. So they established a fundraising support group as means of helping other families of sick children to cope with some of the extra financial hardship which occurs during this time.
This year is the 10th anniversary of the launch and on August 26th, the tenth annual fundraising cycle for the charity will take place in Bruff RFC, Co Limerick in a bid to raise awareness and funds to help families all over the country.
Terry says facing the pressure of mounting financial worries on top of coping with a seriously sick child, is one of the hardest things for families to deal with.
“Cliona had been ill for several years and her death was devastating for all of us, including her brother Colm,” she says. “But through this terrible grief, we felt compelled to try and make something of her death, to find a purpose from our family tragedy. Over the years, as Cliona underwent treatment in various hospitals, we were struck by the number of families facing huge financial hardship and blindsided by non-medical expenses.
“We know from first-hand experience the enormous toll that having a sick child can take on a family, let alone the added nightmare of having to face financial problems. All a parent wants is to be at their child’s side as they go through this hugely difficult time – so they should not have to worry about taking time off work or finding the money for a childminder for their other children while they travel to hospital.
“Imagine losing your child and then desperately worrying about finding the money for the funeral? We even had a case where a family had to pay for a taxi from their home in Waterford to go to Dublin as they had no car and couldn’t use public transport with their vulnerable child. Money should never be an issue when your child is facing a life-threatening illness.”
As well as everyday expenses, there are other practical costs involved with having a sick child – accommodation near the hospital, transportation, alternative therapies, child-care for other children and even little treats to help siblings deal with the effects of watching their family being torn apart by illness.
Pauline Wallace knows what it is like to have a sick child and says the help and support she and her husband Tony have received from Cliona’s Foundation has been invaluable.
“We have two boys, Diarmuid (4) and Eoghan (3),” she says. “Eoghan was born prematurely as I had pre-eclampsia and immediately after his birth he had to be ventilated as was suffering from a collapsed lung. He spent three and a half weeks in the neonatal unit before he was strong enough to come home. But then just nine days later, he was rushed back with breathing difficulties and was diagnosed with suspected aspiration pneumonia and RSV virus, requiring CPAP breathing assistance
“But he improved over the next week or two and again came home. Unfortunately, his breathing deteriorated again and he was re-admitted (to hospital in Limerick) and subsequently transferred by ambulance to the heart centre in Crumlin Children’s Hospital.”
While in Dublin, the little boy underwent further tests where it was discovered that he was silently aspirating on all fluids and instead of ingesting, liquid was trickling into his lungs which could prove to be very dangerous. So it was decided that he should be fed through a PEG tube which was inserted into his stomach. He was finally allowed home when he was six months old.
However, this was not the end of his problems and over the intervening years, Eoghan was diagnosed with chronic lung disease, cerebral palsy, reflux disease, asthma, low muscle tone throughout his body and feeding issues.
But despite these difficulties, Pauline says he is developing into a ‘happy and mischievous little boy’ and thanks to the support from Cliona’s Foundation, she and Tony have been able to give him and Diarmuid their undivided attention as the family rallied together to deal with the repercussions of his illness.
“We found out about the Foundation by chance through a work colleague and I contacted Terry to ask how it could help our family as at that stage we had been living in hospital for about six months and according to research it costs at least €25 for a parent to remain in hospital with a sick child,” says the mother of two.
“But the reality is this is probably much higher as there are many hidden costs such as child care, petrol (in our case from Limerick to Dublin twice a week), accommodation when Tony and Diarmuid came up, astronomical parking fees at the hospital and even having to pay to use the washing machine. Then there was the cost of eating or even having a cup of coffee. By July of 2014, we had about 180 hospital days with a very conservative estimate of the hidden costs coming in around €5000.
“When you have a child very unwell in hospital you focus your energy on getting them well again.
And you prioritise your finances accordingly, so things like car tax and electricity bills get pushed to the bottom of the list as in real terms, filling the petrol tank so you can visit your child in hospital is so much more important than any bill.
“However, after a certain amount of time these bills begin to add up. First you use your savings, then the credit cards. It was at this point that we received a cheque of €1500 from Cliona’s Foundation and I sat and cried with relief. In that one act they had lifted a huge burden from my shoulders. By relieving us of this financial worry they allowed me to focus completely on my baby and his recovery.”
Requests for help are flooding in to Cliona’s Foundation every week and events like the annual cycle help to raise much needed funds to alleviate some of the suffering these families go through on a daily basis.
Terry Ring says while she is aware that the Foundation can’t do anything to help in a medical sense, they can to their level best to ensure that the added stress of financial strain is lessened.
“The ordeal of a child’s grave illness or injury tests families far beyond their endurance, taking an enormous toll financially, emotionally and physically,” she says. “And while we cannot cure a child, we want to help them cope and soften their heart-breaking journey, by providing financial assistance to those who have exhausted all other resources.
“This year alone, 38 families have benefitted from financial funding from Cliona’s Foundation; we are receiving on average 10 applications per month and we sincerely hope that we can continue to support these families during a very dark time in their lives.”
About the Foundation
· Cliona’s Foundation is a registered Irish charity providing financial assistance for non-medical expenses for families who have a child with a life limiting condition.
· It was set up in 2007 to honour Cliona Ring who died as a result of an inoperable brain tumour.
· According to the Foundation, any one point there are 4,800 critically ill children in Ireland and an additional 400 seriously ill children diagnosed every year.
· Since its launch, Cliona’s Foundation has raised well in excess of €1,000,000 and has helped more than 400 families.
· The Foundation does not receive any State funding whatsoever. All monies raised are as a result of fundraising events. Neither Terry nor Brendan take a salary from the charity – all funds go directly to families to help alleviate their non-medical expenses
· Any family looking after a child needs around €10,000.00 p.a. for the additional unexpected, non-medical costs incurred after a child’s diagnosis.
· Cliona’s Foundation 10th Annual Cycle is on Saturday 26th August in Bruff RFC, Co. Limerick. Registration can be obtained on www.eventmaster.ie .