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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

By
APRIL DREW,
Irish Voice Reporter
Published Thursday, September 30, 2010, 6:54 PM
Updated Thursday, September 30, 2010, 6:54 PM

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The Heffernan Family
The Heffernan Family


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

As news trickled across the Atlantic that five-year-old Saoirse Heffernan had been accepted as a candidate for a gene therapy trial at New York’s Cornell Hospital that will prolong and potentially save her life, the Irish American community in New York banded together to raise more than $120,000 on Sunday to pave the way for her recovery.

Saoirse, who lives in Keel, Co. Kerry, spent a week in New York last May undergoing various procedures to assess her strength for a Stage II trial.

Although her tests were favorable, Saoirse was put on a waiting list until last week.  

Saoirse’s parents, Tony and Mary Heffernan, received the news on Friday, September 24 that their only daughter had been accepted on the trial that is to be conducted at Cornell Hospital in early October.


“We received the news on Friday, exactly 52 weeks after Saoirse was diagnosed with Batten Disease,” Tony Heffernan told the Irish Voice from Ireland on Monday.

It was Mary who took the call from Cornell at home in Co. Kerry. Tony was at an important meeting in Dublin when he was frantically interrupted with the good news.

Tony had left instructions not to be interrupted unless it was an emergency. This was a good emergency in Mary’s eyes so she made the call.

“We were just overjoyed when we found out that Saoirse had been accepted but we are also apprehensive,” said Tony.

Although accepted on the trial, Saoirse will have to undergo a verification process when she arrives in the U.S.

“The verification process is to make sure she still meets the criteria for the trials,” explained Tony.

“We are very hopeful, but we don’t know what has happened on the inside of her skull so that will be determined when we get there.”
If all goes well during the verification process, Saoirse will have surgery on Tuesday, October 12. She will be admitted into Cornell on October 8.

In an all out effort by members of the Irish American community in New York, specifically a small group of Cork and Kerry people, to raise as much money as possible to help Saoirse and other children with Batten Disease in Ireland, hundreds of people turned up and emptied their pockets at a fundraiser in the Kerry Hall in Yonkers on Sunday.

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5 Comments

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kilgarvan | Oct 02, 2010, 01:50 PM EDT
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.

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Dublinjas | Sep 29, 2010, 12:26 PM EDT
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.

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Searlit | Sep 29, 2010, 11:18 AM EDT
I am happy to hear that Saoirse has made it to the trials,also. Praying for a cure!

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LinLinisme | Sep 29, 2010, 10:02 AM EDT
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

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JamesMurphy | Sep 29, 2010, 09:43 AM EDT
How sad, too, that people have had to raise money for the trial. It should, of course, be free.

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