By Irish Echo Staff
The Kerryman's Association and others in New York and the U.S. are rallying behind five-year-old Saoirse Heffernan whose battle for life has taken her and her family from Ireland to New York and back.
Saoirse Heffernan is fighting a rare neurological condition called Battens Disease that will eventually take her life if she doesn't receive effective treatment.
Her younger brother Liam is also displaying symptoms of the disease which is named after the doctor who first identified the condition.
Saoirse, who now needs round-the-clock care, has been treated in New York, Dublin and, most lately, at Tralee General Hospital near the family home in Keel.
Saoirse traveled to Weill Cornell Medical Center in New York in October to obtain gene transfer treatment, but was turned down because doctors believed she wasn't strong enough.
However, the family is holding out hope for an alternative treatment plan, one that will commence at the end of the year, but only if the family can raise an additional $250,000 to pay for the treatment. The total cost of treatment is $750,000.
Upon returning to Ireland from New York, Saoirse had some especially difficult days in Temple Street Hospital in Dublin so her family are delighted to have her back in Kerry in time for Christmas.
"Saoirse has had a really tough few weeks," her father, Tony Heffernan, told the Dublin-based Herald newspaper.
"She's had a gastro-virus and pneumonia and there has been neurological deterioration. It's really a matter of life and death now," Tony said.
He said the news that Saoirse was too unwell for treatment in New York had been "devastating" for the family.
"We know it's a progressive condition, but she's deteriorated faster than we thought," he said.
The Heffernans have given numerous television, radio and newspaper interviews as part of their campaign for Saoirse and Liam.
Battens disease is a neurodegenerative condition and it's genetic. Tony and Mary carry a damaged gene. Each child of a couple with the damaged gene has a three to one to one chance of being affected. The condition is exceptionally rare. In addition to the Heffernans there is just one other affected family in Ireland.
Donations are being accepted on the website www.beeforbattens.org or at Allied Irish Bank, Main Street, Kenmare, County Kerry, sort code 93-63-24, account number 06040095.
In the U.S., checks can be sent to The Saoirse Foundation, Kerrymen's Association, 307 McLean Avenue, Yonkers, NY 10705-4488.
