A FAMILY WHO lost their daughter to a rare disease in 2011 have tragically lost a second child to the condition.
Tony and Mary Heffernan are the parents of Saoirse and Liam, who were both diagnosed with Battens Disease while very young.
Sadly, Saoirse died in 2011 at the age of five. Early this morning, Liam died, also aged five.
His father had been updating Twitter followers on his son’s progress and said on April 28 that Liam was in a “very very poorly” condition.
He had been brought to Kerry General Hospital for treatment.
This morning, Tony said:
After the death of their daughter Saoirse, Tony and Mary set up the Saoirse Foundation in her honour.
They also set up the Bee for Battens project, which supports people living with rare diseases around Ireland.
They recently launched the BUMBLEance, an ambulance for transporting sick children to and from their medical appointments.
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