The condition of a young Kerry boy who underwent pioneering brain surgery in New York in 2011 is deteriorating.

Liam Heffernan, 5, from Castledrum, Keel in Co Kerry suffers from a rare condition called Battens disease. Despite undergoing a gene transfer procedure in New York, he has experienced more seizures and has lost his sight.

His parents Mary and Tony lost their first born daughter Saoirse to the same disease in 2010. 

Doctors have told them their son is likely to pass away in the next twelve months.

The couple have been vocal campaigners for Battens disease awareness, which is one of the rarest conditions in the world. Together they established the Saoirse Foundation, which helps other families whose children suffer from rare illnesses.

Tony Heffernan recently spoke to the Irish Independent about his son’s worsening condition.
 “It’s not easy, there are no resources," Tony said.

"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."

“It’s a difficult period," he added.

"He’s going through a huge increase in seizure activity, but he’s coping reasonably well with going blind and losing his mobility. Then, there’s the emotional frustration as well.

“Children tend to learn things and improve all the time. However, children with Battens disease don’t.

"As the disease progresses, it removes those bit by bit. It takes away every single function eventually.

As well as losing his mobility, little Liam is also restricted to a liquid diet.

"Liam hasn’t eaten solid food for over a year, he’s on a liquid insertion. Soon, he’ll get a peg insertion in his stomach so that he can be fed through that.”

Heffernan said he finds strength in his strong relationship with his wife.

"We try to give him the best quality of life. Liam’s needs are significant. One of us has to stay with him overnight. He wakes up on several occasions and you can’t leave him out of your sight for a second. He requires constant 24-hour care,” Tony said.

The couple’s charity is also developing Ireland's 1st Respite Centre for families of children with Rare Diseases, this facility, which will called "Liam's Lodge" is due to be open in 2015.

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