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Family's joy at €250k boost in race against time to save brave Saoirse

FRIENDS of a five year-old girl who suffers from rare Battens disease have raised €250,000 for life-saving treatment in New York, as she returns home from medical trials in America.

Saoirse Heffernan underwent a gruelling routine of tests recently in New York's Cornell hospital, to assess her for ground-breaking medical trials which could save her life.

The brave little girl and her parents returned home from New York to hold a barbeque in their local community, for World Battens Disease Awareness Day.


To their delight, they learned that a quarter of a million euro has been raised in just 10 weeks of campaigning.

Saoirse's dad Tony told the Herald: "The tests were very intense and she was fairly tired when she came out. For one test she had, she wasn't at her best because she was too tired and jet-lagged. They were long days of testing and they started before 8am, and for the second day she was put under general anaesthetic."

More than 100 children from all over the world are undergoing tests to be accepted for life-saving steam-cell surgery, and Tony and his wife Mary hope Saoirse and their son Liam will be chosen.

"There are a lot of parents in a very similar position to us. But we're hoping Saoirse has shown two signs which the others don't have.

"She has retinal retention which means that her eyes are still reacting, and her sight hasn't gone completely. And she was well able to talk and understand what the doctors were saying. She's very determined."

Tony and Mary now have to go through an unbearable month's wait to hear if Saoirse has been accepted for the trials, while Liam will go forward at a later stage.

Battens disease is a genetic, degenerative neurological disorder and without radical treatment in the US, the children will die -- but the family is keeping positive about their chances.

The public is rallying round the family, and last weekend 80 people did a sponsored parachute jump for the appeal, while 70 people ran the women's mini marathon, and 20 took part in the Cork city marathon.

Donations may be made to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24.