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Dad's delighted as Saoirse's op gets green light

The father of the only two children in Ireland with the rare Batten disease is delighted that his daughter will travel to America for revolutionary treatment.

Tony Heffernan's daughter Saoirse (5), who could die at any moment if she has a seizure, has been given the call by doctors in New York to undergo a preliminary assessment as part of medical trials in America.

Saoirse and her 20 month-old brother Liam both have Batten disease -- a rare genetic, degenerative neurological disorder -- and without radical treatment in the US, they will die of the disease.

Tony told the Herald: "We're just over the moon. It's just Saoirse at the moment who will be going out. We know Liam's a bit young but we'll discuss him further when we go out there.

"Saoirse has an idea that she's going, and since Thursday night when we heard, there's been a marked improvement in her form. We're trying to get her there as healthy and strong as possible."

Saoirse will fly out to New York with her parents Tony and Mary next Tuesday and she'll go through tests and X-rays before she flies back home again on Monday, May 31.

"She is a candidate [for the operation]. We're going over to confirm some results from Temple Street Hospital. We got the official invite in black and white for the research trial study so, please God, everything will go well now."

Saoirse will undergo gene therapy later this year, a procedure that involves surgeons boring eight holes into her skull and then injecting a harmless gene-bearing virus into the brain.

The stem-cell operation has been found to significantly slow the progression of the disease, which has already caused Saoirse to lose 70pc of her eyesight. She is in nappies and she is not able to walk, and her parents constantly worry that she could suffer a potentially fatal brain-stem seizure.

Tony and Mary from Castlemaine, Co Kerry are bracing themselves for an exciting but nerve-wracking journey with their two children to New York over the next year.

"We expect it'll be very stressful. Saoirse could be in hospital for up to eight weeks in total, and then she'll be flying over to New York at frequent intervals after the operation," said Tony.

"It's like winning the Lotto. If Saoirse doesn't get there, she dies, but now hope is alive."

Tony and Mary have been working hard to encourage people to donate money to help pay for the €800,000 cost of their children's operations, and they've set up the charity Bee for Battens.

So far they've raised more than €150,000, and they're urging more Herald readers to help them make the life-saving trip to America.

Donations may be sent to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to http://www.beeforbattens.org.