‘Grief doesn’t have a clock. Grief only stops when you die’
Missed milestones are extremely difficult for the Heffernans since losing their children to a rare disorder
Tony, Liam, Saoirse and Mary Heffernan marking National Rare Disease Day at their home in Castlemaine, Co Kerry. The children, who had Batten disease, have since died. Photograph: Domnick Walsh
After relatively healthy pregnancies and babyhoods, neither Mary nor Tony Heffernan had any idea that both their children, Saoirse and Liam, had any underlying health condition – never mind one that would see both of them die at the age of five.
“There was no problem in the first 18 months to two years, no indication of anything, except delayed speech, but I suppose every second mother I met would tell me their child was slow to talk or walk,” Mary says.
“It wasn’t until Saoirse took her first seizure that our world fell in. We didn’t think we were going to be going from seizure to death sentence in a matter of months.”
Tony was working away at the time while Mary was at home with Saoirse, who was continuing to have seizures, and Liam who was just a few months old.
“She went from a seizure in January to having seizures that were out of control,” Tony says. “We had to try to convince the doctors that we weren’t exaggerating.”
Saoirse was initially diagnosed with a rare form of epilepsy and put on medication to control her seizures, but her parents instinctively felt this wasn’t right and fought to have more tests carried out.
“At 12.45pm on September 25th, 2009,” Tony recalls, they were told “in front of Saoirse, in front of everyone else in the ward, that Saoirse had Batten disease.”
The disease is the common name for a broad class of rare, fatal, inherited disorders of the nervous system, also known as neuronal ceroid lipofuscinoses, or NCLs.
“Saoirse was five years, seven months and 14 days when she passed away. The death that the child endured, if you told me beforehand that I would have to witness this and live a life afterwards, I’d have told you you were bonkers,” Mary says. “She suffered immensely in her last three days in particular.”
The Heffernans had little time to grieve their daughter as eyes turned to Liam who in the interim had also been diagnosed with Batten disease. They took Liam to the US for trial surgery which involved having federal law changed to accommodate his age.
The surgery was deemed a success, but Liam’s parents were told “this was not a cure. This was a press pause.”
Although Liam went blind and lost his ability to walk, he remained very interactive and cheerful. He died peacefully on his parents’ 13th wedding anniversary. “Liam was five years, 10 months and one day old.”
This is the hand we were dealt,' Mary says. `Would I change it? No I bloody wouldn’t'
“If truth be told that’s when I feel myself and Tony really felt grief,” Mary says.
Missed milestones are extremely difficult for Mary and Tony, as are cliches such as “time is a great healer” and “God only gives crosses to those who can bear them”.
Their experiences led the Heffernans to set up The Saoirse Foundation, with one of the initiatives being Bumbleance, an ambulance specially designed for children (You can text FUEL to 50300 to donate €2).
They want people to talk about Saoirse and Liam, and not cross the road to avoid them.
Tony says grief has hit him particularly hard in the last nine months. “Grief doesn’t have a clock. Grief only stops when you die, I think.”
“This is the hand we were dealt,” Mary says. “Would I change it? No I bloody wouldn’t. Because if that meant I would have to change having Saoirse and Liam, forget about it – because they were the happiest, happiest days of my life.”