The Irish Voice


Irish child with killer brain disease OK'd for New York gene therapy

Irish community in New York raise $120,000 to pave the way for her recovery


The Heffernan Family
The Heffernan Family

Little Liam and Saoirse’s grandmother Mary will also travel with Tony and Mary for the duration of the trials.

Saoirse’s parents have spent the past few months fundraising to get both children on the clinical trial. Liam will be assessed next year.
The Heffernan’s launched the Saoirse Foundation --www.beeforbattens.org -- to raise funds for the children, and to increase the awareness of this cruel disease.

Since the launch of the charity, two other children have been diagnosed with Batten Disease in the Republic of Ireland and one in Northern Ireland. The charity will continue to raise money for suffers of the disease in Ireland.

Checks are still being accepted to the Saoirse Foundation and can be sent to 305 McLean Avenue, Yonkers, New York, 10705.

Read more - American hospital offers potential gift of life to 4-year-old Irish child

Read more - Race for U.S. cure for Irish brain disease kids


 


Nster.com


5 Comments

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A great collaborative effort by the Kerry and Cork people to give hope where a year ago there was none. Great work Tony Heffernan and Billy O'Sullivan picking up the baton and making it happen.
Well done those fundraisers and of course all who contributed, It is indeed heartwarming when such an amount can be raised so quickly and for such a good cause. God Bless Saoirse we will remember you in our prayers.
I am happy to hear that Saoirse has made it to the trials,also. Praying for a cure!
I am thrilled that she is going to the trials. Hope this will lead to a cure and potentially to cures for other diseases as well
How sad, too, that people have had to raise money for the trial. It should, of course, be free.
 




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