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 u(...)

Anne-Marie Murtagh, holding a photograph of her son Patrick, who was stillborn, with daughters Hope and Grace and husband Paul Flood. Photograph: Nick Bradshaw

We’re not meant to outlive our children. It goes against nature’s plan. And yet, for some parents, the harsh reality of life that doesn’t go according(...)