Irish family seeks help from America for their dying children
“I heard one doctor mention Saoirse’s name and this thing called Batten’s Disease in the same sentence,” he said.
Not familiar with the term, Heffernan began to Google its meaning. His heart began to rip from his chest slowly as he read what was before him.
Batten’s Disease is a rare neurological disorder that begins in childhood. It is always fatal.
“Less than four hours after I heard that doctor say Batten’s Disease we were back in Temple Street Hospital and the news wasn’t good,” Heffernan said.
The Heffernans worst nightmares became a reality.
“I was the first to break down and then when Mary saw me she knew what it meant,” said Heffernan. “When I asked was it fatal they said it was.”
Saoirse was kept in hospital another 10 days but the results were still the same. Nothing could be done.
A return visit in December to determine her life expectancy brought even more heartbreaking news.
“They gave Saoirse two to three years but they said she wouldn’t see double digits,” Heffernan sadly shared.
Losing their child wasn’t an option. Immediately after diagnosis, Heffernan began searching for cures or programs worldwide that could give his little girl a chance in life.
“If we don’t do anything our children will die,” he said
While the Heffernans were frantically trying to find help for their eldest child, another blow came their way last month.
Airing on the side of precaution, they decided to get their youngest, Liam, tested for Batten’s Disease.
“He was showing no symptoms at all aside from a little delayed speech so we really didn’t think he would also have it, “ said Heffernan.
Unfortunately on March 2, Liam too was confirmed to have the fatal disease.
During his research, Heffernan happened across a Batten’s Disease trial in Weill Medical College of Cornell University in upstate New York that gave him hope for his two children.
In 2004 a clinical trail was launched at Cornell to study a gene therapy method for treatment of the signs and symptoms of Batten’s Disease. An experimental drug works by delivering a gene transfer to the brain. In 2008 the procedure was deemed safe.
The Cornell trial is to begin at the end of the year. According to Heffernan, they usually only accept eight to 10 children.
Both Saoirse and Liam are registered for the trial, but neither has been confirmed and won’t be for another few months.
“The children have to be very strong for this trial, and thankfully Liam is at the minute, and although Saoirse is not so strong she is a real little fighter and we hope she will make it onto the program too,” he said.
According to Heffernan, there are only three children in Ireland alive with Batten’s Disease.
“That’s our two plus one other child. I’ve already been in contact with at least six parents who have buried their children from this,” he said agonizingly. “We don’t want this to be us too.”
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