The Buzz Blog - News
Little five year old (5) Saoirse Heffernan has peacefully passed away in the arms of her Parents Tony & Mary Heffernan, at 1am this morning following a battle for life against Batten’s Disease at the family home in Keel in Co Kerry.
Saoirse who enjoyed a peaceful Christmas with her family had some serious complications soon after and she finally lost her battle against Battens Disease in the early hours of this morning. Saoirse will be waked at the family home before being buried at the local Keel Cemetery on Thursday. The family would like to thanks the doctors, nurses and carers who helped Saoirse and her parents over recent weeks.
Saoirse’s story and that of her brother Liam have captured the hearts of the nation and beyond over that past 10 months since the little girl’s story came to light following her parents’ emotional appearance on The Late Late Show in March 2010. When Saoirse’s parents, Tony & Mary Heffernan described how their life had been turned upside down since the diagnosis of their only daughter with the devastating Late Infantile Batten’s Disease, on the 25thSeptember 2009. The Heffernan’s received further heart breaking news on March 2nd, that their only son Liam also has the fatal condition.
The Heffernan’s, who launched a national charity for Battens Disease, “Bee For Battens, The Saoirse Foundation” also in March, are devastated at the loss of their little angel Saoirse, who’s condition had deteriorated at an unprecedented pace since her return to Ireland in October from the US, where she narrowly missed out on a potentially lifesaving medical treatment trial at the Weill Cornell Facility in New York.
The Heffernan’s and their charity Bee For Battens, The Saoirse Foundation are hopeful though, that Saoirse’s little brother Liam will go to the states for assessment and participation in the treatment trial early this year,.
The charity is continuing its campaign to raise awareness of Batten’s Disease, to support families and fund treatment trials and research into this cruel fatal disorder.