Father battles to save his children’s lives

A CORK father has vowed to fight to provide the life-saving treatment his two young children so desperately need.

Tony Heffernan, who now lives in Kerry with his wife Mary, has started the mammoth task of raising hundreds of thousands of euro to bring his children to the US to take part in clinical trials for Batten disease.

The Heffernan family, who live in the small close-knit community of Keel near Castlemaine, came to national attention when they appeared on last Friday’s Late Late Show. But Mr Heffernan said that was just the beginning of the journey he hopes could lead to a cure for Saoirse, 4, and 20-month-old Liam. They are the only sufferers of Batten disease living in the Republic of Ireland, and their only hope of survival is the clinical trial which starts later this year.

“At least if the worst outcome happens and we lose the kids we can always say we tried. I’d hate to look back and say why didn’t we do this or why didn’t we do that,” Ms Heffernan said.

“If it was only to give you another six months with them, it would be worth it.”

The family was rocked when their daughter Saoirse was confirmed as a sufferer last September, after initially being diagnosed with epilepsy.

There followed three months of intense supervision and medication as doctors tried to find the best a treatment to suit her, but after another major seizure, she was admitted to Kerry General Hospital where she suffered up to 200 seizures a day.

“We knew there must be something else to it and our doctor agreed so Saoirse was sent to Temple Street,” mum Mary recalled.

“When she was eventually diagnosed with Batten disease, I didn’t know what it meant at all. I just asked the doctor was it fatal and he said that it was. I don’t know what happened for a while after that, you just go into a spin,” she revealed.

Worse was to come earlier this month when their second child, Liam, was diagnosed with the same fatal disease.

“We really didn’t think Liam had it... he had no symptoms – I’d have bet the house on it. But we just wanted to have it on paper that Liam didn’t have this disease so we went for tests,” Mary explained.

“There were a couple of days when I was just in a blur. People were calling but I didn’t know what was going on to be honest. Then I came to the point, I said look, we have to do something. We can just sit there and say poor us, our children have Batten disease and that’s the end of that,” she added.

The couple set up a charity to help all Batten sufferers in Ireland and began their efforts to have both Saoirse and Liam included in a ground-breaking clinical trial at Cornell University in New York.

“It hard enough to get them on the trials but then the financing of it is justferocious. It’s hundreds and hundreds of thousands of euro,” Mary explained.

“Liam is a definite candidate. He’s pre-symptomatic and just an ideal candidate for them and Saoirse is a possibility. They wouldn’t rule her out but the fact that she is a bit more progressed obviously makes it more difficult,” she added.

The couple has been overwhelmed with the support they have got from their local community in Keel, in Kenmare where Mary is originally from but also from Tony’s native Cork, especially around where he grew up in the Model Farm Road. But they are under no illusions as to the task that lies ahead.

* Full details of the charity, ongoing fundraising efforts and online donations can be made by logging on to www.beeforbattens.org