‘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.