| 7.5°C Dublin

Liam (2) off to US in search of cure for disease that killed sister

A LITTLE boy who suffers from a rare brain disease will travel to the US for potentially life saving treatment -- just five weeks after his sister died from the same condition.

Liam Heffernan (2) suffers from Late Infantile Batten's Disease, which affects just 1,000 children globally, and is now vying for a place in a US trial which could save his life.

Tony and Mary Heffernan tragically lost their five-year-old daughter Saoirse in January to the same condition. Now they are preparing to take their son to New York for a batch of new tests.

Top doctors invited the family to the prestigious Weill Cornell Medical Centre in New York to undergo a new trial to treat Liam's condition. His older sister Saoirse's condition was not deemed suitable for the trial -- but there are positive signs for Liam.

"We only lost Saoirse about five weeks ago, at least it gives us some kind of hope to try and save Liam," his father Tony told the Herald.



barrier

"They are the only hospital in the world which is attempting to treat this disorder.

"Doctors in America have received his preliminary results and diagnoses and approved them for a more stringent assessment.

"After that assessment, then there is the possibility of surgery over the next few months."

Liam would be the first Irish child to receive this experimental treatment, which has been provided to just over a handful of children since this trial began in August 2010.

The Heffernan family have been mourning the loss of beautiful Saoirse, who could not undergo the same trial because her condition had progressed too quickly and was deemed untreatable by medical officials.

And Liam's dedicated parents are facing yet another barrier with their son's treatment -- he needs to be three years old to undergo the surgery, and his family have petitioned to allow him to have the operation sooner.

"Myself and my wife could do with a bit of positive news," Mr Heffernan said.

"Saoirse passed the assessment in May 2010, but the hospital had a delay in getting the treatment ready.

"When she went back for verification for surgery, she had progressed too far and they wouldn't risk the operation.

"Unfortunately her progression accelerated too quickly and then she passed away.

"It is why we're focusing on Liam now, he is our top priority. He'll be three in July, and you are meant to be three before the surgery, but we have applied to have it sooner."

The toddler is now on a new diet because he is no longer able to swallow solid foods, as well as a new medication to keep his seizures at bay before jetting off to New York for the treatment.

"Liam is showing signs of the disease much earlier than Saoirse which is extremely worrying," Mr Heffernan said. "We really are in a race against time to save his life."

The Heffernans launched the National Batten's Disease Charity, Bee For Battens last year and are currently fundraising for Batten's sufferers throughout the country.

cmcbride@herald.ie