It was 2012. Louise was seven and she had just been diagnosed with leukaemia.
For the following year, hospital appointments, follow-ups, and Louise’s treatment would dominate their lives.
The Shortalls had assumed any child diagnosed with cancer would automatically be entitled to a medical card — they were shocked to discover this wasn’t the case; a medical card, even for a seriously ill child, was based on parental means, not a child’s medical need.
After completing a gargantuan amount of paperwork and facing down HSE bureaucracy, they were eventually given a temporary card for Louise but remained outraged that parents of seriously ill children didn’t have an automatic entitlement to cards and that any received faced an automatic review.
Two years later, Ms Shortall’s brother Peter Fitzpatrick came up with an idea. They’d mount a picket outside the Taoiseach’s office every morning until he too began to see the enormous injustice of not helping the country’s sickest children.
And so it began on Louise’s birthday in May 2014. Kevin Shortall, Peter Fitzpatrick, and Mark Fitzpatrick — no relation but the father of seriously ill Eric — stood outside Enda Kenny’s Leinster House office with a 20ft banner calling on medical cards to be made available to children with serious illnesses.
They wrote letters explaining the Our Children’s Health campaign to the country’s 158 TDs and started an online petition that, within a matter of months, had been backed by tens of thousands of parents and won the backing of Down Syndrome Ireland, the Special Needs Parents Association, and the Jack and Jill Foundation.
Every Tuesday, Wednesday, and Thursday morning that the Taoiseach arrived at work, the three men were standing there. Two dads and one uncle. Week after week. Month after month. They stood with their banner until Mr Kenny walked past and they’d then scatter in three directions to work.
“We started to hear more and more stories from parents about what difficulties they were facing with their children and that just increased our determination. We had to seek permanent change. Widening discretion wasn’t enough,” said Mr Fitzpatrick.
They heard tales of parents desperately trying to raise money for medical equipment for their children; equipment that had to be replaced regularly as their children grew.
Mr Shortall said: “The cost of illness on parents was driving us but a bigger motivation was that there are so many health services that can only be accessed if you have a medical card, it’s a gateway to a range of services for sick children. We wanted to create a system whereby this country would look after its sickest children.”
Mr Kenny didn’t ignore them; he’d stop to talk to them. He’d utter platitudes, that ‘it’s not a situation we want’. But nothing would change.
The campaign was suspended at various points when hope was offered. Mr Fitzpatrick was offered a place on the clinical advisory group for medical card eligibility but that didn’t go anywhere. He ran as an independent candidate in the general election in Dublin South West, attracting a strong vote for a first-timer with Katherine Zappone, now the children’s minister, elected when he was eliminated.
“There isn’t a person in the country that would deny a medical card to these children, so why is it that our Government does,” his campaign posters stated.
And then, last week, after 1,057 days of protests, Our Children’s Health got word President Michael D Higgins had signed the Health (Amendment) Bill into law following a Dáil vote last summer to give the 33,000 children in receipt of the domiciliary care allowance (children with such an illness that requires care above the norm) a medical card. It comes into effect on June 1.
The card will be issued automatically and will not be subject to review.
Before the Health Bill amendment, 10,000 of these children, despite being among the most unwell in the country, were not in receipt of a card.
So now the campaign is over.
And yesterday, Louise, who is no longer in cancer care but will remain under the eye of Crumlin for another two years, celebrated her Confirmation with her family in Clondalkin.
Dad Kevin Shortall was overjoyed: “Yes, our family have got over this but there are so many more parents, like Mark, struggling on every day with very sick children.
“Even today, there are parents around the country undergoing antenatal scans who will have the news broken to them that their baby will be born with a serious illness or needs expert care. Those parents may have a big fight ahead but at least they won’t be fighting for a medical card.”
And as for his brother-in-law Peter Fitzpatrick, he said: “He’s a political genius. He pulled this campaign together and we’ll be forever in his debt.”