Friday July 10, 2020

Fighting the good fight

When Tony and Mary Heffernan found their two children had a rare terminal disease, the couple set about raising the sizeable funds required to participate in a pioneering US medical trial

Susan Mitchell

Deputy Editor and Health Editor

@susmitchellsbp
29th May, 2010

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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