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
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
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