Tragic Liam Heffernan 'very very poorly' as Battens Disease takes hold
Published 28/04/2014 | 20:53
THE dad of gravely ill boy Liam Heffernan has posted a heartbreaking photo on Twitter of his son in A&E, saying the five-year-old's condition is now "very very poorly".
Liam suffers from the debilitating Battens Disease and last year lost his sight and began suffering a surge in seizures.
The five-year-old lost his older sister Saoirse to the same disease in 2010 when she was his age.
His parents - Tony and Mary Heffernan were told last year that their son will more than likely pass away in 2014.
His condition has clearly worsened since then and the new photo from his dad shows him in accident and emergency at Kerry General Hospital, close to the family home in Keel, Co Kerry.
In the last year, Liam has gone blind, lost nearly all mobility and has not be able to consume solid foods.
“It’s not easy, there are no resources," Tony said at the time.
"At the moment, we don’t get much assistance. You keep asking and asking, and hoping something will happen, but that’s life. His lifespan is less than 12 months to live, apparently. His sister died at five and a half and he turned five on July 3rd."
Tony and Mary Heffernan are vocal campaigners for Batten's disease awareness, which is one of the rarest conditions in the world.
The couple also run the Saoirse Foundation, supporting other Irish families in similar positions.