After burying their daughter a little over a month ago, Tony and Mary Heffernan have welcomed the news that their son, Liam, who suffers from Batten Disease, which took his sister’s life in January, has been invited to attend an assessment in New York to see if he is eligible for a potentially life saving trial.
Liam, 2, was born was the rare and fatal disorder. His sister Saoirse, 5, passed away in her parents’ arms on January 19 after enduring months of seizures that her little body could no longer fight off because of the unforgiving disease.
The family, who live in the village of Keel in Co. Kerry, is still devastated. Tony and Mary are now shifting all their energy into saving their only surviving child’s life.
The Heffernans got the news this past weekend that Liam was invited to New York for a baseline assessment that, if passed, will allow the young Kerry boy a place on a treatment trial that will prolong and may save his life.
Favorable medical examinations and testing at Temple Street Children’s University Hospital in Dublin and at Great Ormond Street in London, gave Cornell Medical Center in New York the go ahead to invite the toddler for further testing here.
Liam, who is due to attend the prestigious New York hospital in the next two weeks, will undergo an intensive baseline assessment of his present condition to ensure that he will be suitable to receive a gene vector transfer operation later this year.
The Heffernans have been down this windy road before.
Last year Saoirse was invited, after being told in May she was in good enough health for an upcoming trial, to participate in the same assessment, but due to a rapid deterioration in her health over the summer she failed.
Tony and Mary were beyond heartbroken, and after returning to Ireland armed with another plan Saoirse got worse until finally nothing more could be done for her medically.
If accepted on the trial Liam would be the first ever Irish child to receive this experimental treatment, which has been provided to just over a handful of children since the trial began in August 2010.
After an emotional appearance and plea on Ireland’s longest running talk show, The Late Late Show last year, Tony and Mary founded Bee for Battens in an effort to raise the necessary funds to send their children to the U.S. for the trial. The money collected also helps out the other five families in Ireland who have children with the disease.
Tony stated, “This is the first bit of good news which our family has received since Saoirse’s death, and while we are not building our hopes too much we are very hopeful that Liam will get the opportunity to participate”.
Since its foundation hundreds of thousands of dollars has been raised for the Bee for Battens charity. On Monday Noah Coughlan, a Florida-based Irish American, commenced a 2,500 mile Batten Disease “run for research” across the U.S., starting in San Diego and ending in Florida.
Coughlan will proudly wear the “Bee For Battens” logo throughout his journey. More information available at www.battenjourney.com and www.BeeForBattens.org.
In New York a charity has also been set up on the back of a fundraiser held in the Kerry Hall in Yonkers last September where over $120,000 was raised for Saoirse and other Irish Batten Disease suffers.
To donate, checks can be mailed to the Saoirse Foundation, Kerrymen's Association, 307 McLean Avenue, Yonkers, New York 10705-4488.