On Tuesday morning, five-year-old, Saorise Heffernan died in her parents arms after a long battle with a rare and fatal brain disease. Her father, Tony, spoke about his heartbreak and his hope that their son Liam, who suffers from the same disease, will be eligible for the New York treatment Saorise could not receive.
Speaking to the Independent from him home in Keel, Castlemaine, County Kerry he said that he, and his wife Mary, are praying that this trial treatment in New York can offer Liam some hope.
Saorise fought infantile Batten’s Disease for over a year. Her parents brought her home in December to spend more time with her family over Christmas. She was waked in the family home before her funeral on Thursday morning in Keel.
Tony said “We're heartbroken and devastated but at least there's no more pain for her and she's eventually free from this bloody disease…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.”
Batten’s Disease is an a rare inherited disorder of the nervous system. It usually manifests in childhood. Children begin to suffer from mental impairment, seizures and progressive loss of sight and motor skills. Only, about, 1,000 children worldwide are known to have the disorder and only four have been registered in Ireland. These include Saorise and her brother Liam.
Saorise and her family came into the public eye last march on Ireland’s most watched TV show “The Late Late Show”. Her parents made an appearance on the show explaining that their lives had been thrown upside down since her diagnosis in 2009. That very same month they received that gut wrenching news that Liam suffers from the same disease.
Last October, after tireless fundraising by the Heffernans and the public on both sides of the Atlantic, Saorise missed out on participating in a medical trial at the Weill Cornell Facility in New York. Her condition deteriorated upon her return to Ireland.
In November Tony and Mary were told by doctors that Saorise was “beginning to grow her angel wings”.
Tony and Mary hope that in the next few weeks Liam will travel to the U.S. to undergo the medial trials that Saorise missed out on. It’s estimated that the trial treatment will cost $500,000. The family will have to stay with their little boy in New York for one month as he recovers.
To donate to the family’s charity Bee for Battens visit www.beeforbattens.org.