herald

Saturday 23 September 2017

Saoirse (5) flies to US for chance to be saved from Batten disease

A five-year-old girl who suffers from Batten disease has departed Ireland for a New York hospital which will give her a chance to receive life-saving treatment.

Saoirse Heffernan and her parents Tony and Mary flew from Dublin Airport yesterday following a call by doctors in New York's Cornell hospital to undergo a preliminary assessment for medical trials.

Tony told the Herald yesterday: "We're a bit excited now knowing that in a few hours we'll be over there. Please God this is the first step to saving our daughter. She is in great form."

The schedule for the trials will be very intensive, he said. "It'll start at 8.30am and go on until 6pm at night, which is a lot for a child who has a nap in the afternoon and is not under too much stress in her normal routine."

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.

Out of 200 children who suffer from Batten disease, the doctors in New York's Cornell Hospital will choose only 16 sufferers for the life-saving stem-cell surgery.

Tony and Mary are both nervously excited about their trip to New York, which could give their daughter the kiss of life.

"She'll have a number of additional tests with equipment which I don't think is available in Ireland. The doctors will be making sure that they're happy to proceed," Tony said.

"I anticipate they'll do a baseline assessment on every candidate first, and then they'll pick the strongest. Hopefully Saoirse will be one of those."

Tony and Mary are currently on an emotional rollercoaster, watching their two children deteriorate as Batten disease takes hold of their little bodies.

"We're just hoping that everything goes well. We just have to keep going, and hopefully we'll follow over with Liam soon.

"Batten disease is such a cruel disease. It slowly wants to take your child away from you. We're just focusing on keeping our children."

He added: "The rollercoaster of emotions we go through is like what Batten disease does to a child. You have your ups and your downs. You see your child running around perfectly and the next thing you see it [the disease] trying to take them away. We see the way Saoirse has been affected with seizures."

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

ggittens@herald.ie

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