On evenings, in between trips to Temple Street with their terminally ill child, David and Mary Crowe would sit down to discuss the price of oil, electricity and hospital canteen meals.
Their daughter was dying, but household bills and expenses kept coming.
“You are worrying about your child. You are constantly checking to see she is breathing… Next thing you get an electricity bill,” recalls Mr Crowe whose family’s story features in a Virgin Media Three documentary “Ireland’s Forgotten Families”. Sarah was diagnosed with a terminal illness in 2007 at the age of three. Although she was given 12 months to live, she battled for nine years against a progressive mitochondrial disorder, called Alpers disease.
Mr Crowe quit his job to care for her, while his wife, Mary Crowe, worked “all the overtime hours under the sun” to keep the lights on for the family of four, including younger son Jimmy, he tells The Irish Times.
“I was the lucky one because I saw the good and the bad as I had all the time with Sarah. I will never regret staying at home. I was privileged for that.”
Throughout her illness, Sarah provided light to the family, Mr Crowe adds. She could be endlessly entertained by a balloon and would tell the same jokes “over and over”.
“She taught us so much about how to appreciate life,” he says.
However, “simple, stupid things” became extremely difficult to manage, says Mr Crowe. The family racked up various expenses travelling from Limerick to Dublin for medical visits, while he relied on canteen meals when Sarah had prolonged hospital stays.
“Everything is pressure… The bank doesn’t care if your child is going to die. The electricity company doesn’t care,” he says.
Rainy day savings amassed prior to 2007 disappeared in “jig time”, he adds: “It is raining every day, seven days a week, all year around… You cannot sustain it.”
In the toughest years, Cliona’s Foundation provided some financial assistance to help the Crowes cover non-medical expenses. The Limerick-based charity was established by Brendan and Terry Ring, whose daughter Cliona died from an inoperable brain tumour in 2006 at the age of 15.
Families with children suffering life-limiting illnesses such as theirs and the Crowes are “forgotten”, says Mr Ring, adding that the cost of living has seen an increase in those turning to Cliona’s for financial assistance.
There is blunt anger in Mr Crowe’s voice when he speaks of feeling abandoned by the Government during the worst of times.
“Four hundred families a year are told their child is going to die. The government could come in with a swipe of a pen and pay their mortgage and bills to take the pressure off,” he says.
He thinks of other parents who will be told today that their child is going to die and their “world is destroyed”.
“The government needs to help these families. They could do that through the likes of Cliona’s Foundation,” he adds.
“Ireland’s Forgotten Families” will be aired on Thursday evening at 9pm and
will also be available to view on the Virgin Media Player.