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Family's agonising wait for Saoirse's stem cell surgery

THE family of the only two Irish children to suffer from deadly Batten Disease has been dealt a blow since their daughter's chance to receive a life-changing operation has been pushed back by one month.

Siblings Saoirse (5) and Liam (2) Heffernan suffer from the fatal genetic condition, and Saoirse urgently needs life-saving stem cell surgery in New York or else she will die.

The family have been enduring an agonising wait to hear if they've been accepted for the trials since early June, but now American doctors have told the family that they won't get news until next month.


Tony Heffernan, their father told the Herald: "It just makes us more anxious. Initially we were told that Saoirse wouldn't be able to go for an assessment until July and we were delighted when that was brought forward to June.

"Now we can't stop worrying about Saoirse, we just want her there as quickly as we can."

While Liam is almost guaranteed to receive the treatment because he is pre-symptomatic, which makes him an ideal candidate, Saoirse is at a constant risk to common viruses.

"Saoirse is not too well because she picked up a virus. She's been sick for the past few days and she's vomiting a lot. It's been a tiresome few days. She's not in hospital because she'd be at risk to further infection so we're caring for her at home."

He added: "The number one cause of terminally ill children being killed is they contract a common virus."

The clock is ticking for Saoirse, and her family desperately want to receive good news that she's been accepted to the New York trials as soon as possible.

Tony added: "We've had great support from our local GP Dr Eugene Cotter, he checks on her twice a day, once at lunchtime and once in the evening, and he's become a trustee of the charity Bee for Battens."

"Saoirse is doing ok still though, she's still happy and doing her physio from her bed. It's painful but we're not the only parents in the same situation and we just have to bite our fingernails for longer now."

While Liam has delayed speech and he has some problem with walking, he is still considered pre-symptomatic for Batten disease.

Donations can be made to AIB, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to www.beeforbattens.org