Saorise Heffernan, a five-year-old County Kerry girl, has lost her battle with the rare and fatal neurological condition Batten’s Disease. Saorise died in her home in Keel early on Tuesday morning surrounded by her family.
The brave girl first came to the attention of the public in March 2010 when her parents, Mary and Tony, went public. They were trying to raise awareness and also funds to get her and their son, Liam, who also suffers from the disease, involved in a medical trial in New York.
Although Saoirse travelled to New York for extensive treatment she was not accepted into the trial medical treatment. Her parents are still hopeful that Liam will be accepted into the trial this year.
Last week her parents, Mary and Tony, made a substantial donation to the Jack and Jill Foundation (who have been aiding with home care for Saorise) after doctors told them there was no hope for their little girl.
At the time, Tony said “Saoirse has no recollection -- she's in a different place. She's lost the ability to move and communicate. All she can do is move her eyes from side to side and her eyelids…The doctors have told us that she's starting to grow her angel wings and there's nothing we can do about it.”
Visit B for Battens for more information