Wednesday 28 June 2017

Parents of girl turned down for life-saving trial vow to fight on

Majella O'Sullivan

Majella O'Sullivan

THE parents of a five-year-old child who was turned down for medical trials that could save her life have vowed to pay for private treatment.

Saoirse Heffernan is returning to Ireland after she was turned down for medical trials at New York's Weill Cornell University Hospital at the weekend.

Her parents, Tony and Mary, are now desperately trying to raise €750,000 to pay for the treatment privately. Saoirse suffers from Battens Disease, a fatal disorder of the nervous system, for which new medical trials offer the only hope of survival.

Her father, Tony, said the latest news was "devastating". However, the family has been given a glimmer of hope as Saoirse has been offered a place on a new trial due to commence in November or December.

Donations are accepted on the charity Bee for Battens website www.beeforbattens.org or at National Irish Bank, sort code 95-16-80, account number 90029084 or at AIB, Kenmare, sort code 93-63-24, account number 06040095.

Irish Independent

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