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Dublin: 14 °C Tuesday 11 August, 2020

#bee for battens

From TheJournal.ie 'I know the current system doesn't work, I've buried two children' Rare Diseases

'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.

From TheJournal.ie '€9,000 and more to come': Surge in donations to BUMBLEance after robbery Good News
From TheJournal.ie Family marks Rare Disease Day by remembering late daughter Saoirse Bee For Battens

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.

From TheJournal.ie 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.

From TheJournal.ie 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.

From TheJournal.ie The Evening Fix...now with added 'Wake the F**K up' Need To Know

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

Things we learned, loved and shared today.

From TheJournal.ie People affected by rare diseases asked to have their say on new plan Survey

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.

From TheJournal.ie 270,000 people in Ireland suffer rare health condition Health

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.

From TheJournal.ie Little Liam receives bravery award Bee For Battens

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.

From TheJournal.ie Column: ‘After watching my daughter die, we had to do everything’ Opinion

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.

From TheJournal.ie Kerry toddler Liam Heffernan making "awesome" recovery from brain surgery in New York Liam

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.

From TheJournal.ie Brother of tragic Saoirse may be sent to US for trial treatment Saoirse

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.