Brave Saoirse ‘starting to grow her angel wings’

THE heartbroken parents of five-year-old Saoirse Heffernan, who recently travelled to the US to undergo treatment for Batten’s Disease, have been told their little girl is “starting to grow her angel wings”.

After a recent rapid deterioration in her condition, Saoirse, from Keel in Co Kerry, who has been battling the rare disorder of the nervous system, is at home being cared for by her family with the help of the local palliative care team.

Her father Tony said the young girl’s heart had stopped on four occasions over the past 10 days, but that it had started again on each occasion.

“We hope she will be with us a lot longer,” he said.

“I am looking at her asleep here and her head is thrown back to one side and she is asleep, but she cannot move any part of her body now.”

Mr Heffernan said Saoirse had suffered very serious and prolonged seizures and her paediatric consultant Dr Fergus Leahy had told them what to expect.

He said, however, that he hoped the family — including Saoirse’s younger brother Liam who has also been diagnosed with the condition — would spend Christmas together.

Just two months ago, Saoirse was making progress in the US where she was being assessed to receive potentially lifesaving medical treatment at the Weill Cornell Facility in New York.

After narrowly failing the trial acceptance criteria, she had been sent home to have her medication re-examined by her neurology team at Temple Street Children’s Hospital in Dublin.

Since then she has suffered a number of complications, including pneumonia and the seizures which have left her paralysed.

Mr Heffernan said there was hope for his son Liam, who is set to be assessed for the pioneering treatment trial in the new year.

“It involves a series of injections into the brain.

“The first boy who underwent this treatment is making great progress so there is hope,” said Mr Heffernan.

It is thought Liam will be joined by other Irish Batten’s children, including four-year-old Amelia Ryczan from Carrickmacross in Co Monaghan, who is going through a registration process with the US institution.

The Heffernans, who have launched a national charity for Batten’s Disease, Bee For Battens, The Saoirse Foundation, are campaigning to raise awareness of Batten’s Disease, to support families and fund treatment trials and research into the fatal disorder.

Its website www.beeforbattens.org accepts donations online, or at any AIB bank, account number: 06040095, sort code: 93-63-24 or post to Bee For Battens, Castledrum, Keel, Castlemaine, Co Kerry.