Sunday 18 February 2018

Family hopes for one more Christmas treat

Majella O'Sullivan

THE family of a five-year-old girl who have battled tirelessly to save her life are hoping they will get one more Christmas with her.

Tony and Mary Heffernan have been forced to face the reality that their precious Saoirse is going to die.

Saoirse's medical team has told her parents that she's "starting to grow her angel wings".

Despite their best efforts, the little girl from Keel, Co Kerry, is losing her battle for life against Late Infantile Batten Disease, a neurodegenerative disorder.

"We did everything we could to try and save her but Batten's is sending her to her place in the sky sooner than we wanted her to go," Mr Heffernan told the Irish Independent.

"We just hope she's not in any pain and we hope she will be here for Christmas."

The Heffernans are determined to continue working for the national charity they set up, 'Bee For Batten's, The Saoirse Foundation'.

Saoirse's little brother Liam (2) also suffers from the disease.

The charity is asking the public to join their Facebook group in a drive to get matched sponsorship of a single euro for every member over 50,000.

Saoirse was due to undergo medical trials at New York's Weill Cornell in October but was turned down.

The charity has launched a new website www.beefor where it accepts donations online, or at any AIB bank Account number: 06040095 Sort: 93-63-24 or post to Bee-For-Battens, Castledrum, Keel, Castlemaine, Co Kerry.

Irish Independent

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