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'I know the current system doesn't work, I've buried two children'
Both of Tony and Mary Heffernan’s children died at the age of 5.
Your contributions will help us continue to deliver the stories that are important to you
Both of Tony and Mary Heffernan’s children died at the age of 5.
Faith in humanity restored.
The Heffernan family, who set up the Bee for Battens charity, lost Saoirse to Battens disease when she was just five.
The concept comes from the parents behind Bee for Battens.
Liam Heffernan is just five years old, but does not have long to live. His parents say they are looking for more help from the HSE.
Things we learned, loved and shared today.
The government is looking for consultations up until 13 July from anyone affected by rare diseases.
An organisation representing sufferers has launched a campaign for better care for patients with unusual disorders.
Three-year-old Liam Heffernan and his family are celebrating after the Kerry native won an award for bravery. Liam has Batten’s disease and underwent brain surgery in New York recently.
Tony Heffernan describes taking his three-year-old son to New York for brain surgery – and why he’d have done it himself if he knew how.
Liam, 2, is the youngest person to ever receive the pioneering treatment which aims to counter the rare neurological disorder he suffers from, Batten’s Disease.
Parents of little girl who died yesterday of rare Batten’s Disease “hopeful” that her brother Liam may get latest medical help.