Tony and Mary Heffernan 'step back' from the Saoirse Foundation

The 16th BUMBLEance ambulance being launched earlier this year in memory of Saoirse Heffernan. Picture: Robbie Reynolds Photography and the Saoirse Foundation

Tony Heffernan, co-founder of the children’s charity the Saoirse Foundation, has announced that he and his wife Mary are “taking a step back” from their work.

In a message shared on social media on Wednesday Mr Heffernan said they were both “heartbroken” to take this decision.

“Due to circumstances beyond our control, Mary & I are heartbroken to state that we have taken the decision to step away from the Saoirse Foundation,” he said.

Due to circumstances beyond our control, Mary & I are heartbroken to state that we have taken the decision to step away from the Saoirse Foundation.
We set up the charity in March'10 as a family of 4 and now we depart as a family of 4 with Saoirse & Liam tucked up in our hearts.

— Tony Heffernan a DAD (@BeeForBattens) July 14, 2021

“We set up the charity in March '10 as a family of 4 and now we depart as a family of 4 with Saoirse & Liam tucked up in our hearts.” 

Dozens of well-wishers left messages for Mr Heffernan on his social channels, praising the couple for their work in improving access to healthcare for vulnerable children.

A spokesperson for the foundation said the board was planning to meet on Wednesday evening to discuss the implications of this. It will issue a statement on Thursday morning.

The Co Kerry couple are well-known for their charitable work, especially for setting up the children’s ambulance service BUMBLEance.

Their commitment to children’s health was inspired by the ill health and tragically early deaths of their children Saoirse and Liam, who both had the rare genetic condition Batten disease.

Mr Heffernan has previously said when their children were first diagnosed the couple did not know where to go for information about this rare condition, and they wished to spare other families this trauma.

The Saoirse Foundation is a not-for-profit charity for critically and seriously ill children throughout the island of Ireland.

It fundraises for services, supports, and research. The foundation also provides guidance information for carers and families.

The Bee for Battens project within the foundation aims to raise awareness about Batten Disease, and to educate healthcare workers as well as families.