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“We want to be ready. If we get accepted we want to have the funds there to save our kids’ lives,” said Heffernan.
Tony, originally from Cork, and his wife Mary, from Kerry launched a new charity website, www.beeforBattens.org to raise funds for the children, and to increase the awareness of this cruel disease.
Although the Heffernan children are the only two Batten sufferers in Ireland at the moment, the charity will continue to raise money and be available for future Irish children who may suffer form the disease.
“It’s also creating awareness about the disease and that’s important,” said Heffernan.
After Saoirse and Liam’s story ran in the Irish Voice two weeks ago and subsequently on our sister website, IrishCentral.com, funds have come pouring in from the U.S.
“Thanks to all the fundraisers here and the kind hearted donations from people in America we have now raised close to *****150, 000,” Heffernan said.
“There is even a woman with children who suffer from Batten that wants to set up a U.S. version of Bees for Batten,” he added.
The only other sufferer of this disease in the Irish Republic is Saoirse’s younger brother, Liam, and the family is hoping that he will follow his sister to the U.S. later this year or early into 2011.
“Liam is still too young for trials, but we are hoping that by the end of the year he will get a call for an assessment like Saoirse,” explained Heffernan. Initially diagnosed with epilepsy, Saoirse has been in and out of hospital since she was young with aggressive seizures, until finally last September it was discovered that she had a disease that would end her life.
Just before Christmas last year, Saoirse was given two to three years of life expectancy.
Losing their child wasn’t an option. Immediately after diagnosis, Heffernan began searching for cures or programs worldwide that could give his little girl a chance in life.
While the Heffernan’s were frantically trying to find help for their eldest child, another blow came their way in March -- Liam too was confirmed to have the fatal disease.
Looking back on their willingness to save their children’s lives, Heffernan said, “If we had sat back and didn’t go about finding out information about the possibilities of saving them and creating a charity we would be suffering and in a very bad position today.
“I’m just glad we have the foresight to drive ahead when we needed to and now it’s paying off with the news of the assessment in New York,” he added.
Heffernan is very grateful to the Kerryman’s Association of New York which has taken on the responsibility of looking after Tony, Mary and Saoirse (Liam will remain at home with family) while they are in New York.
“Bill O’Sullivan and the Kerryman’s Association and the Kerry and Cork GAA teams have been superb to us, and we are looking forward to meeting them all when we get there,” he said.
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