herald

Monday 11 December 2017

Heartbreak as Saoirse is refused life-saving US op

CRUSHED: Now Battens family must find f180k for 'second chance' trial

THE crushed family of brave Saoirse Heffernan are returning home to Ireland after US doctors refused to give the green light for potentially life-saving treatment.

Saoirse (5), who has the rare neurological condition Battens Disease, was deemed to be unsuitable for an experimental medical trial by doctors in New York.

Tony and Mary Heffernan had travelled to Weill Cornell Hospital, New York, for a chance to obtain life-saving stem cell surgery for their daughter.

The devoted parents to Saoirse and Liam (2), who also has the condition, raised over f500,000 through a new charity, Bee For Battens.

But now they are in a race against time to raise another $250,000 (€180,000) to pay for treatment on a parallel trial later this year.

Tony said that the news that the young girl was unsuitable was "devastating".

"We came all the way out here in the hope that Saoirse still met the criteria since her last test in May," he said. "But she has obviously slipped back. We know it's a progressive condition but she's deteriorated faster than we thought."



Blind

Saoirse underwent a number of physical and neurological examinations in New York, but Dr Ronald Crystal had to break the news that her condition had gone too far.

The young girl has recently become blind because of the illness, she has also lost the use of her legs and reverted to nappies, but her courageous parents had hoped that pioneering surgery in America could stop the deterioration in her health.

Dr Crystal said that the young girl would be suitable for a parallel treatment trial due to begin in late November or December.

"It's really a matter of life and death now," Tony said.

"Someone has put a price on her head.

"We managed to raise $500,000 within six months and we had the public behind us. I'm going to knock on every single door to get the money."

The Heffernans, from Kerry, now face having to raise another $250,000 within a month.

Liam (2) has already been accepted for the subsidised trial and his treatment is due to begin next summer.

Saoirse will arrive home on Wednesday and will return to Temple Street Children's Hospital for a full check up.

Donations are accepted on the charity Bee for Battens website www.beeforbattens.org or at AIB, Kenmare, sort code 93-63-24, account number 06040095.

clairemurphy@herald.ie

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