At the weekend, festivities were organised in Kerry for World Batten Day.
June 4th was a day of both celebration and mourning. Liam, the two year-old son of Tony and Mary Heffernan who suffers from the rare neurological disorder Battens Disease, was happily playing with his cousins on a bouncy castle at World Batten Day, after undergoing and surviving through the pioneering brain surgery in New York in May.
Liam, oblivious to the attention of others who can only perceive what the boys family are going through, does not comprehend at his early age that the same day of the bouncy castle is in fact the same day as his late sister's birthday.
The Heffernan's four year-old daughter Saoirse died in January of this year of the same neurological disorder that her brother Liam is living with. Unfortunately, Saoirse had been too weak for the revolutionary treatment her younger brother Liam has successfully undergone.
Hundred's of supporters came to the Kerry Way near Killarney to show their support for the family and friends of those suffering from the neurological disease. For parents Tony and Mary Heffernan, the day carried with it a disturbing truth. On one hand their son is alive and recovering well while on the other hand, on the exact same day, they mourn the loss of their daughter on the birthday that would have been her 6th.
"It was so sad getting up today when there were no candles, no birthday cake and no Saoirse," Mary told the Irish Independent.
A few years ago, Tony and Mary Heffernan had never even heard of the disease that had taken over their lives. Now, more and more people are finding out about the disease through the charity they founded 'Bee for Battens: The Saoirse Foundation.'