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Dublin: 13°C Thursday 26 May 2022

#bee for battens

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

'I know the current system doesn't work, I've buried two children'
# Rare Diseases
# Rare Diseases

'I know the current system doesn't work, I've buried two children'

Feb 26th 2015, 5:30 PM 23,279 Views 3 Comments

Both of Tony and Mary Heffernan’s children died at the age of 5.

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

'€9,000 and more to come': Surge in donations to BUMBLEance after robbery
# Good News
# Good News

'€9,000 and more to come': Surge in donations to BUMBLEance after robbery

Oct 4th 2014, 9:00 AM 10,841 Views 14 Comments

Faith in humanity restored.

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

Family marks Rare Disease Day by remembering late daughter Saoirse
# Bee For Battens
# Bee For Battens

Family marks Rare Disease Day by remembering late daughter Saoirse

Feb 28th 2014, 7:30 AM 14,925 Views 15 Comments

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
# Bee For Battens

BUMBLEance: The ambulance specially made for critically-ill kids

Sep 7th 2013, 11:30 AM 14,489 Views 34 Comments

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

Aug 6th 2013, 8:30 PM 18,841 Views 31 Comments

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 Fix...now with added 'Wake the F**K up'
# Need To Know
# Need To Know

The Evening Fix...now with added 'Wake the F**K up'

Sep 27th 2012, 7:50 PM 9,694 Views 7 Comments

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
# Survey
# Survey

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

Jun 20th 2012, 7:00 AM 2,253 Views 4 Comments

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
# Health
# Health

270,000 people in Ireland suffer rare health condition

Feb 29th 2012, 7:10 AM 6,465 Views 7 Comments

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
# Bee For Battens
# Bee For Battens

Little Liam receives bravery award

Nov 28th 2011, 2:38 PM 3,469 Views 4 Comments

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’
# Opinion
# Opinion

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

Aug 17th 2011, 7:43 AM 108 Views 13 Comments

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
# Liam

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

May 18th 2011, 1:35 PM 1,804 Views 0 Comments

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
# Saoirse
# Saoirse

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

Jan 19th 2011, 1:35 PM 2,246 Views 0 Comments

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