Tuesday 28 March 2017

Brave little Saoirse loses her fight for life

Mary and Tony Heffernan at home with Saoirse and Liam over Christmas
Mary and Tony Heffernan at home with Saoirse and Liam over Christmas

Majella O'Sullivan and Fergus Black

A FATHER spoke yesterday of his heartbreak after his five-year-old daughter lost her fight for life against a rare disease.

Little Saoirse Heffernan, who captured the hearts of the nation, died peacefully in the arms of her parents, Tony and Mary, in the early hours of yesterday at her home in Keel, Castlemaine, Co Kerry.

The couple are now praying that costly treatment in the US will offer some hope to their only son Liam (2), who also suffers from the disease.

Saoirse, the couple's only daughter, had battled against infantile Batten's Disease, for which there is no known cure, since she was diagnosed more than a year ago.

Her parents had brought her home in December so they could spend one more family Christmas together. She is being waked at home before being buried in Keel tomorrow.

"We're heartbroken and devastated but at least there's no more pain for her and she's eventually free from this bloody disease," Tony said yesterday.

"Her life was short but she gave a great account of herself. She was not a little fighter, she was a massive fighter. We'll cherish these last few days with her and then a lifetime of memories."

Battens Disease is an inherited rare disorder of the nervous system that usually manifests itself in early childhood. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills.

Worldwide, only about 1,000 children are known to have the disorder and only four Irish children -- including Saoirse and Liam -- have so far been registered here.

Tony and Mary made an emotional appearance on 'The Late Late Show' in March when they described how their lives had been turned upside down since Saoirse's diagnosis in September 2009. In the same month of their TV appearance, the couple received further heartbreaking news when Liam was diagnosed with the same condition.

Saoirse narrowly missed out on participating in a medical trial last October at the Weill Cornell Facility in New York.

Following her return from the States, however, her condition deteriorated at an unprecedented pace.

Her parents were told in November that she was "beginning to grow her angel wings" and would finally succumb to the disease.

In the next few weeks, the couple hope to bring Liam to the US to undergo medical trials to treat the disorder. The cost of the trial treatment will be an estimated €500,000 and the family will have to stay there for a month while the little boy recovers from the ordeal.

Anyone wishing to contribute to the family's charity 'Bee for Battens, The Saoirse Foundation', can log on to www.beeforbattens.org.

Irish Independent

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