Wednesday July 8, 2020

Firstperson: Tony Heffernan

Tony Heffernan: 42, charity campaigner, Kerry

30th March, 2014
Tony Heffernan: 42, charity campaigner, Kerry. Picture: Maura Hickey

Between 6 and 8 per cent of people in Ireland will be affected by a rare or genetic condition in their lifetime. That's a significant proportion of the population.

My wife Mary and I do what we do for one reason alone. Our children, Saoirse and Liam, were born with Battens disease, a rare neurodegenerative condition that causes seizures and leads to immobility and blindness. It's always fatal.

The foundation operates BUMBLEance, Ireland's first ever children's ambulance....

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