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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