FIVE-YEAR-OLD Saoirse Heffernan, who has been battling the rare Battens disease, died at her home in Keel, Co Kerry, early yesterday morning.
The Heffernan family said Saoirse had enjoyed a peaceful Christmas but developed serious complications soon afterwards and died in the arms of her parents, Tony and Mary, at 1am. She will be waked at the family home before being buried at the local Keel Cemetery tomorrow.
The Heffernans had travelled unsuccessfully to the United States last October in an attempt to get Saoirse on a potentially life-saving treatment programme. A major fundraising campaign in the Kerry area had raised several hundred thousand euro to pay for treatment.
Saoirse and her family had also appeared on The Late Late Show in March 2010, but the same month the Heffernans received further bad news that their only son Liam also has the condition.
Battens disease is a very rare recessive neurodegenerative disorder which essentially stops the brain from recycling brain cells.
Since Saoirse’s diagnosis, the family and supporters have set up the charity Bee for Battens, The Saoirse Foundation (beeforbattens.org), to provide support for those affected and to raise awareness of the disease.
When diagnosed, the Heffernan children were the only two known cases of late infantile Battens disease in the Republic, while there is one girl in the North.
Through contact with the family of the girl from Northern Ireland, the Heffernans discovered a human medical trial starting at the Weill Cornell University Hospital in New York. While Saoirse narrowly missed out on participation, the family is still hoping Liam will go to the United States for assessment and participation in the treatment trial early this year.
The charity is continuing its campaign to raise awareness of Battens disease, to support families and fund treatment trials and research into this fatal disorder.
The foundation’s goals are to try to save those affected and find a cure. It hopes to develop networking opportunities for families, medical professionals and supporters.
