Tony Heffernan clearly recalls the exact moment his family’s life changed forever. He was sitting in Temple Street Hospital with his wife, Mary. ‘‘On December 21, at a quarter to one, Dr Lynch told us our girl had Batten disease,” Heffernan says.
It is a rarely spoken of condition, but Heffernan knew what it meant. He had looked it up on the internet some hours earlier, having heard doctors mention the...
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