The Heffernan Family

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


The Heffernan Family

Saoirse’s surgery on October 12 is the first phase of an ongoing 5-year treatment plan.  The surgery will initially involve injecting a harmless gene-bearing virus into her brain. It has been found in a previous trial to significantly slow the progression of the disease.

The Stage II trial is aimed at extending the life expectancy of those with the disease, and providing greater quality of life.  It is also an important step towards finding a cure.

The Heffernans have their flights booked and are in the process of organizing accommodations near Cornell so they can be close to their daughter when she begins the treatment.

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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