Saoirse Heffernan returns to Co. Kerry while waiting for New York life saving treatment

The Heffernan Family

Five-year-old Saoirse Heffernan, who is battling a rare neurological condition called Battens Disease that will eventually take her life if she doesn't receive treatment, is back in Co. Kerry, Ireland this week after spending four weeks battling infections in a Dublin hospital.

She is now being treated in Tralee General Hospital, close to her family home in Keel, Co. Kerry.

Saoirse, who has a younger brother Liam that also suffers from the disease, traveled to Weill Cornell Hospital in New York in October to obtain treatment but was refused in the end because she wasn't strong enough.

However hope came from a parallel trail that will commence at the end of the year once Saoirse's family can raise an additional $250,000 to pay for the treatment. The total cost is $750,000.

Upon returning to Ireland from New York Saoirse has had some scary days and nights at the hospital in Temple Street Hospital in Dublin so her family are delighted to have her back in Kerry.

"Saoirse has had a really tough few weeks," her dad, Tony, told the 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.

Tony said the news that Saoirse was unwell for the New York trial was "devastating."

"We know it's a progressive condition but she's deteriorated faster than we thought."

Donations are accepted on the charity Bee for Battens website www.beeforbattens.org or at AIB, Main Street, Kenmare, Co 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

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