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Irish Battens Child heading to US for Treatment.

Posted by Bee For Battens in News | 4 comments

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Liam Heffernan (2), from Castledrum, Keel, Castlemaine, in Co Kerry, has been invited to participate in a pioneering second generation human medical trial which has recently commenced at the prestigious Weill Cornell University Hospital in New York.

The invitation for Liam has come exactly 9 weeks after his sister Saoirse (5) passed away is her parent’s arms from the same and very rare, fatal disorder, Late Infantile Battens Disease. The family, who just returned from the New York facility last week, received the good news by phone yesterday evening, stating that Liam had successfully met the strict criteria to allow his participation in the trial.

Liam, (2), the only other child of Bee For Battens Founders, Tony and Mary Heffernan, will be the 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 three children worldwide, 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.

Comments on this Article

    Carol 26/04/2011

    Hoping and praying that the operation will be a success. Go Liam!

    Noeline and Ciara 24/03/2011

    We are so happy to hear this news. We send you lots and lots of Angel Blessings.

    Anne Lawlor 22/03/2011

    This is good news indeed, personally and on behalf of the 22q11 Ireland support group we wish Liam the very best and send loving thoughts and best wishes his way. Anne

    Avril Daly 22/03/2011

    This is such wonderful news and all at Fighting Blindness send Liam and family every good wish on this journey. Avril

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