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Dublin: 20 °C Saturday 30 May, 2020

#bee for battens

# bee-for-battens - Thursday 26 February, 2015

'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.

# bee-for-battens - Saturday 4 October, 2014

# bee-for-battens - Friday 28 February, 2014

Family marks Rare Disease Day by remembering late daughter Saoirse

The Heffernan family, who set up the Bee for Battens charity, lost Saoirse to Battens disease when she was just five.

# bee-for-battens - Saturday 7 September, 2013

BUMBLEance: The ambulance specially made for critically-ill kids Bee For Battens This post contains images

BUMBLEance: The ambulance specially made for critically-ill kids

The concept comes from the parents behind Bee for Battens.

# bee-for-battens - Tuesday 6 August, 2013

Parents concerned over hours of HSE care for dying son

Parents concerned over hours of HSE care for dying son

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.

# bee-for-battens - Thursday 27 September, 2012

The Evening with added 'Wake the F**K up'

Things we learned, loved and shared today.

# bee-for-battens - Wednesday 20 June, 2012

People affected by rare diseases asked to have their say on new plan

The government is looking for consultations up until 13 July from anyone affected by rare diseases.

# bee-for-battens - Wednesday 29 February, 2012

270,000 people in Ireland suffer rare health condition

An organisation representing sufferers has launched a campaign for better care for patients with unusual disorders.

# bee-for-battens - Monday 28 November, 2011

Little Liam receives bravery award

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.

# bee-for-battens - Wednesday 17 August, 2011

Column: ‘After watching my daughter die, we had to do everything’

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.

# bee-for-battens - Wednesday 18 May, 2011

Kerry toddler Liam Heffernan making "awesome" recovery from brain surgery in New York

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.

# bee-for-battens - Wednesday 19 January, 2011

Brother of tragic Saoirse may be sent to US for trial treatment

Parents of little girl who died yesterday of rare Batten’s Disease “hopeful” that her brother Liam may get latest medical help.