The Buzz Blog - News
A 2 year old Irish boy, Liam Heffernan, from Castledrum, Keel in Co Kerry, who suffers from Batten’s Disease, will depart from Dublin Airport tomorrow afternoon to participate in a pioneering medical treatment trial in the United States which could give the youngster his only chance of life.
Liam will travel with his parents to the prestigious Weill Cornell University Hospital in New York, where surgery for Liam (2) will take place next Tuesday, May 3rd, exactly 15 weeks after his only sibling, Saoirse (5) passed away is her parent’s arms on January 18th from the same & very rare, fatal disorder, Late Infantile Battens Disease.
Liam, (2) who is the only son of Tony & Mary Heffernan, will become the World’s youngest ever child to receive the pioneering brain surgery, which involves the drilling of six (6) holes in Liam’s skull to allow the gene transfer treatment to be administered to twelve locations in Liam’s brain.
Since the trial began in August 2010, only four children, all of whom are American, have received the gene transfer. The trial coordinators have recently gained permission from the US federal authorities to treat Liam following their application to reduce the participation age below the 3 year old minimum age requirement.
Liam will remain in the US for a period of one month after surgery, and will return to Ireland just in time for World Batten’s Day, which will be marked officially for the second time ever in Ireland on June 4th,, at “The Kerry Way”, Killarney. The event which will include several top live bands & artists, children’s entertainment, with free admission to the event, as a gesture of thanks to all of those whom have supported the family. A special balloon release will take place to mark what would have been Saoirse’s 6th birthday.
There are only approximately 750-1000 sufferers of Late Infantile Battens Disease worldwide, with less than a handful of sufferers in Ireland. The Bee For Battens charity will continue is fundraising campaign to allow the participation of other Irish children in medical treatment trials, fund research whilst also providing support to sufferers and their families on the Island of Ireland.
The Charity also recently released an awareness video on You Tube http://budurl.com/BeeForBattens , dedicated to Saoirse.