herald

Wednesday 23 January 2019

Tears for 'little angel' Saoirse as she dies in mum and dad's arms

HEARTBREAK: Girl (5) loses Batten's struggle

BRAVE Saoirse Heffernan has lost her battle for life.

The five year-old, who had been battling against Batten's disease died peacefully in her parents arms this morning.

Devastated Tony and Mary Heffernan today paid a heartwarming tribute to their "little angel" who died at 1am after more than a year of fighting the rare disease.

They said their beautiful little girl, who enjoyed her last Christmas at home in Keel, Co Kerry, had suffered serious complications soon afterwards.

Saoirse, who was a vibrant and plucky little girl, was diagnosed with the killer disease in September 2009, and she suffered regular seizures and gradually lost the ability to walk and communicate.

Her story and that of her brother Liam, who has also been diagnosed with Batten's, have captured the hearts of the nation following their parents' campaign to raise funds for treatment for them in New York.



PACE

Her parents spent almost a year chasing a cure for her in the Weill Cornell University Hospital, New York, but last October doctors told the family that she did not meet the hospital's requirements for the treatment.

Her condition deteriorated at an unprecedented pace since her return to Ireland, and eventually she lapsed into a vegetative state. Tony told the Herald last year: "The rollercoaster of emotions we go through is like what Batten's disease does to a child. You have your ups and your downs. You see your child running around perfectly and the next thing you see it [the disease] trying to take them away. We see the way Saoirse has been affected with seizures."

He described his beautiful daughter as "a sweetheart and an absolute darling," who bravely battled against the disease.



trial

Her parents first noticed that something was wrong with Saoirse when she had a seizure in January 2009, and she soon went from a normal child who could jump on her trampoline and lost the ability to walk.

They launched a national charity for Batten's disease, Bee For Batten's, The Saoirse Foundation also in March. Last July, Saoirse and her brother were invited to meet President Mary McAleese.

Saoirse will be waked at the family home before being buried at the local Keel Cemetery on Thursday.

The Heffernans hope Liam will now go to the States for a treatment trial early this year.

Their charity is continuing its campaign to raise awareness at www.beeforbattens.org.

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