Surgery hasn’t cured boy, 3, of Batten disease

The parents of a three-year-old Kerry boy who has Batten disease have been told the pioneering surgery he had in New York last year is not going to be a cure.

However, Tony and Mary Heffernan yesterday said they would continue to leave no stone unturned for their son, Liam, and are hoping for another treatment trial in Los Angeles next year.

The family yesterday flew from Dublin to New York where he will undergo further assessment at the Weill Cornell University Hospital.

He had eight-hour brain surgery in the hospital a year ago. The surgery involved a gene transfer procedure. The genes were administered to 12 locations in his brain through six holes drilled through his skull.

“This week, he will be going through a full head-to-toe assessment and will have a full MRI scan to determine the extent of any deterioration in his condition,” said Mr Heffernan.

“Liam is still improving and is continuing to have speech and language therapy and occupational therapy.

“Overall, he has a good quality of life. He just needs a lot of care and watching. He can’t be left alone and we have to keep a seizure watch all the time.”

Liam is the youngest child in the world to undergo a gene transfer procedure and the only person outside the US to receive it.

The Hefferans, who live in Keel, Castlemaine, are helping another Irish family to take a child with Batten disease to New York for assessment.

The disease is a rare neurological disorder and also claimed the life of the Heffernans’ five-year-old daughter, Saoirse, their only other child, in Jan 2011.


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