'My four year-old daughter's bedroom was like a scene from a horror movie'
Three years ago Cork mum of two, Susan Daly, was given the shocking news that her four year old daughter Olivia had a huge growth on her liver and would have to travel to Kings Hospital London for vital treatment.
Susan, from Carrigaline in Cork, has spoken of her ordeal to highlight the work of the Cliona’s Foundation which is a registered charity which was founded 10 years ago to provide financial assistance for non-medical expenses to families across Ireland with children undergoing long-term medical treatment.
Susan revealed that at just four years of age her daughter kept getting poorly with more and more infections and tummy bugs.
"Then, during Christmas week, in the middle of the night, we awoke to hear Olivia screaming. She had had a major internal bleed. What we faced in that bedroom was like a scene from a horror movie.
"I was frozen in shock - I just saw blood everywhere. We raced to A&E where everyone sprang into action. I could see that we were losing her, fast. Thankfully, my baby came back."
Susan spent the next four months living on chocolate and microwave meals as she sat by Olivia’s bedside in the UK. Most of her daughter’s liver was removed. Luckily, Olivia narrowly avoided a liver transplant, but this possibility still remains on the cards.
"I was trying to come to terms with it, trying to cope. I’d tried to keep a degree of normality because you can’t be frantic all the time. But everywhere I went, like the supermarket, well-wishers would rush over to say how awful it was and how sorry they were. You get just so worn out.
"People mean so well and try to help but they have no idea what you are going through, and I pray they never do. As soon as I put the kids to bed, I would cry my eyes out. I was so angry with myself for crying but you can’t be brave all the time".
"Because we were between Crumlin Children’s Hospital in Dublin and Kings Hospital in the UK, I had to stop working. But the bills don’t stop. We fell behind. Everything started adding up, flights, medicine, everything.
"You can barely put one foot in front of the other, so applying to the bank for help was just not an option. Suddenly, a cheque came in the post and I have never been so grateful.”
Terry Ring, who co-founded Cliona’s Foundation along with her husband Brendan in honour of their daughter Cliona, who died in 2006 from an inoperable brain tumour aged 15, said unless you’ve been in the position of having a really sick child in your family you don’t know how quickly expenses can mount up.
"We want to support families who are already going through the horrific trauma of dealing with a very ill child shouldn’t have to face dealing with money worries on top of that.”
Having a child with a life-limiting condition engulfs families, changing their lives. Caring for a seriously ill child takes a tremendous toll, both emotionally and physically. The hidden costs can be overwhelming for these families due to the unending list of added expenses; from parking to petrol, additional heat and extra childcare.
Cliona’s Foundation is a registered charity founded in 2007 to provide financial assistance for non-medical expenses to families across Ireland with children undergoing long-term medical treatment.
Cliona’s Foundation believes 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.
It is Brendan and Terry’s intimate understanding of the stress as a result of their journey with Cliona that is brought upon families with a seriously ill child that explains the diversity of expenses covered by Cliona’s Foundation.
The charity provides financial assistance for non-medical expenses when other support avenues have been exhausted; rent, food, utility bills, transportation for chemotherapy, alternative therapies, a treat for a sibling and even covering the cost of a child’s funeral.
To date the Foundation has raised in excess of €1 million, supporting almost 300 families with a child that is critically ill and in need of additional financial support.
