'Cliona's charity has been a real lifeline for us'
Following the loss of their daughter in 2006, Limerick couple Brendan and Terry Ring set out to help other families with a terminally ill child cope financially, writes Joanna Kiernan.
When Terry and Brendan Ring tragically lost their 14-year-old daughter Cliona eight years ago, the couple set out to honour her memory by helping other families.
"In 1998, Cliona was diagnosed with an inoperable brain tumour," Terry explains. "In January 1999, she was referred to Crumlin [children's hospital] and over the course of the next 18 months she had chemotherapy treatment.
"For the next eight years, she remained very well. There were a few hiccups along the way, but nothing too serious and most times we were at home within the week," Terry adds. "Cliona led a very full and happy life up until 2006, but it was during these eight years that we realised that there are people out there with very ill children, who were in less fortunate situations than us and were struggling to make the trips to hospital, or buy essentials for the sick child, or pay travel costs and parking fees, which can be huge."
In 2007, the year after Cliona died, Brendan and Terry set up Cliona's Foundation, a registered Irish charity, which offers non-medical aid to families with a terminally-ill child.
Brendan and Terry's understanding of the unique stresses upon such families inspired them to cover a diverse range of expenses through the foundation - from rent, food and utility bills, to transportation for chemotherapy and alternative therapies, a treat for a sibling and funeral expenses.
The work has helped both Terry and Brendan to cope with the loss of their daughter.
"Cliona's legacy still lives on with us because of the work we do in her name, and there is an emotional attachment to that for us and that's very important," Brendan explains. "But there is also a real need to help these families that are struggling, because when you are told that your child is terminally ill or critically ill, or has a life-limiting illness, you don't need financial difficulties on top of that.
"The foundation was set up in Cliona's name, because we lost her, but from that loss there has also come a lot of good. We have helped over 200 families, we have raised almost €600,000, so her memory lives on in her work and that keeps us going," Brendan adds. "I suppose, in a way, it helps us deal with Cliona's loss, but every day it's like we have just lost her the day before - that's how it feels."
David Crowe, from Tipperary, is the father of Sarah (11) who has Alper's syndrome, a rare terminal condition.
David and his wife Mary were told that Sarah would not live beyond the age of 10. However, Sarah, who is 11, is now the world's oldest child living with Alper's syndrome.
"Sarah was diagnosed when she was four years of age," David explains. "It's a degenerative brain disease, so it is terminal. She was given a year to live and they said if we were lucky she would have two years, but she has progressed since and she is still with us."
"She has her ups and downs now. She is no longer able to walk, she gets seizures, but in general she is in fairly good health and she is happy and laughs every day," he adds.
Alper's syndrome is a progressive condition, the symptoms of which include dementia, seizures and quadriplegia. Most people with Alper's disease do not show symptoms at birth and can develop normally for weeks and even years before the onset of symptoms.
David is Sarah's primary carer.
"She's great and she is determined. Any road block that has come up, she has got around it in her own way. When she stopped walking, she decided 'Well I'm not going to sit here in the chair', so she makes her way around," David says proudly. "She has surpassed what the doctors keep telling us. They keep hammering it down your throat that she is terminal, they never see the positives, but she gets to enjoy life too. She is an exception to the rule."
David and his family have received support from Cliona's Foundation in recent years.
"At the time, Sarah was able to walk, but her walking was never very good. She was very unbalanced so she would always fall over, so what we did with the donation Terry and Brendan gave us was we made a safe play area for Sarah in the back yard," David explains. "It has all rubber mats so that Sarah can play outside and she won't hurt herself. And now, even though she can't walk anymore, she sits on her bottom and uses her hands to get around that way, so she still goes out to it. It's vital to her life."
The support of Cliona's Foundation has been a lifeline for the Crowe family and not just in the financial sense.
"You don't actually realise, Sarah was in hospital initially for six weeks and between myself and my wife Mary, we were up and down with her," David says. "There was one of us there at all times, so you don't realise that the money is going and you're not getting paid because you are out of work all the time. But the bills keep coming in, even if you have a sick child."
"When this happens, you are in a dark place," David adds. "You have friends, but even some friends turn their back on you, they move away from you, they don't know what to say to you. So when these people who you have never met, come out of the blue and they want to help you out, it's just incredible; you realise that there are people out there who care about your daughter and about helping her to have a good quality of life, for whatever amount of time that is."
There are currently an estimated 1,400 children living with life-limiting and terminal conditions in Ireland.
Terry and Brendan Ring are on a mission to provide help, and hope, to families around Ireland, who are going through what they too endured. They may have lost their beloved Cliona, but through their work, Brendan and Terry they are keeping her memory alive.
For further information on the Cliona Foundation, see: http://clionasfoundation.com or find them on Facebook at: www.facebook/clionasfoundation.com
Health & Living