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Soairse and Liam Heffernan suffer from a fatal brain disease

Boxers fight hard for Saoirse and Liam Heffernan who have a fatal disease

\"Soairse

Soairse and Liam Heffernan suffer from a fatal brain disease

Boxers from all over Ireland took to the ring at the weekend to fight for the lives of Saoirse, 5 and Liam, 2 Heffernan from Co. Kerry who are battling to stay alive after being diagnosed with a rare disease called Late Infantile Batten Disease.

The charity fights took place at the side of a Kerry mountain where a full-size boxing ring was airlifted by helicopter for the event.

Irish boxers participating in the event included Willie “Big Bang” Casey, Philip Sutcliffe and female boxer Christina McMahon.

Irish boxer and father-of-four Willie Casey was glad to contribute to the family's efforts. He beat Philip Sutcliffe in an exhibition match while MS McMahon took on Richard Balfe.

"All I do is fight to make a comfortable living," Casey said. "Tony and his two kids are fighting to save their lives.

"I would urge everyone to help these incredibly strong people out," he added.

Liam Heffernan, the children's father, said the campaign had been a "massive success", and so far more than €400,000 has been collected to help save his children.

Fewer than 1,000 people in the world suffer from Batten's - there are four in Ireland. Victims usually don't live beyond the age of 12.

Back in June Saoirse spent two days at Cornell University Hospital in New York to assess if she is strong enough to undergo a gene transfer trial that could save her life.

Saoirse and Liam’s parents have been told that their children will not survive this very rare condition.

Although Tony, originally from Co. Cork, and his wife Mary, from Co. Kerry, had registered both of their children with Cornell for trials, they were unsure anything would come from it.

Tony, 38, told Irish Central back in June that the assessment went well, but they won’t know if Saoirse will fit the criteria for trials for a few months.

“Some parts of it were a bit overwhelming to her because of tiredness and jetlag, but she did well. We hope to have news of her results in the next month or so,” Heffernan said.

The Heffernan’s remain positive.

“The good news for us is that Saoirse was the seventh child to be screened (out of hundreds) so we are hopeful.”

Heffernan added, “Plus we had some positive news from individual doctors, some saying that Saoirse had one or two attributes that were stronger than other candidates so that news was very well received by us, but of course we are not hanging our hat on it.”

If accepted to the trial Saoirse will undergo gene therapy, which involves injecting a harmless gene-bearing virus into the brain. It has been found to significantly slow the progression of the disease.

Based on the cost incurred by U.S. families who had children on this trial, Heffernan estimates that up to $500,000 could be spent per child on the trials.

If Saoirse makes the final cut for the trials then a substantial amount of the hospital trials will be paid for. The Heffernan’s will, however, be responsible for everything else, including living expenses for 18 months, the duration of the trial, in New York.

However, if Saoirse doesn’t make the first cut she may be allowed on a “compassionate use” trial, a program that allows its treatment to be administered to seriously ill patients that are not enrolled in clinical trial. The Heffernans would have to incur the cost of this program.

“We want to be ready. If we get accepted we want to have the funds there to save our kids lives,” said Heffernan. The Heffernan’s launched a new charity website www.beeforbattens.org to raise funds for the children, and to increase the awareness of this cruel disease.

Tony said recently that Saoirse is "now blind and can hardly speak anymore" while her brother has "unfortunately has also started having seizures, which is a year and a half earlier than is usual, and he has about 40 seizures a day".

A committee has been set up in the Bronx/Yonkers area in New York to organize a fundraiser for Sunday, September 26 at the Kerry Hall in Yonkers.

To donate to the Heffernan’s’ effort to save their children’s lives and to help others in the future who suffer from the fatal disease log onto www.beeforbattens.org.

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