Chronic illness in children: ‘It is the hidden costs that you are never asked about’
There are an estimated 1,400 critically ill children in Ireland, and 400 children are diagnosed with serious illness each year
Having a seriously ill child may upend a family’s priorities in life but there are still bills to pay.
Terry and Brendan Ring know this more than most, having taken a heartbreaking, eight-year journey with their daughter Cliona, who was diagnosed with an inoperable brain tumour at age seven and died in December 2006 at age 15.
They now run a charity set up in her honour, Cliona’s Foundation, which helps parents of critically ill children with non-medical expenses.
Friends and neighbours will always be concerned about your child, says Terry, but “it is the hidden costs that you are never asked about”. Nor would you expect to be, she continues, but they can be quite substantial: from the moment you close your front door on a trip to the hospital with your child, until you get back home: hopefully that evening, but in a lot of cases it may involve an overnight stay or be much longer term.
Once travel costs, food, drink and often hefty parking fees are taken into account, and maybe childcare for siblings, €100 out-of-pocket expenses a day is the absolute minimum, she suggests, for families who live some distance from the hospital where their child is being treated.
For 15 months after she was diagnosed, Cliona had to travel from their home in Limerick to Our Lady’s Children’s Hospital in Dublin for chemotherapy every four to six weeks. Although it might be as late as 9pm before they got home, at least they were usually spared overnight stays.
Generally, Cliona had a good quality of life and was able to go to school most days and continued playing her tin whistle and piano. “We realised we had to grasp every moment that we had and, thankfully, we have no regrets and we were able to do things as much as possible,” says Terry.
It was when friends and neighbours said they wanted to put together a CD in memory of Cliona, and asked the Rings what they might like to do with the proceeds, that the idea for the foundation was born. It has helped more than 200 families to date, having raised and distributed €600,000.
There are an estimated 1,400 critically ill children in Ireland, and 400 children are diagnosed with serious illness each year. The foundation hopes that within the next 12 months it will be able to assist 60 of its families, and needs about €320,000 to do so. Social workers often refer parents, usually those with children attending Crumlin or Temple Street hospitals. They are asked to complete an application form and to include a letter from the child’s consultant
“We are not looking for anything too taxing,” Terry adds, “because we fully understand all the paperwork that goes on once you walk through hospital doors. The last thing you want is to start filling out more forms.”