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Saorise Heffernan loses her battle with killer brain disease

Five-year-old Kerry girl passes away after battling Batten’s Disease

By
CATHY HAYES,
IrishCentral.com Staff Writer
Published Thursday, January 27, 2011, 5:50 PM
Updated Thursday, January 27, 2011, 5:50 PM

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Saoirse Heffernan pictured with her parents
Saoirse Heffernan pictured with her parents


Read more: Brave Saoirse begins to grow her ‘angels wings’

Saorise Heffernan, a five-year-old County Kerry girl, has lost her battle with the rare and fatal neurological condition Batten’s Disease. Saorise died in her home in Keel early on Tuesday morning surrounded by her family.

The brave girl first came to the attention of the public in March 2010 when her parents, Mary and Tony, went public. They were trying to raise awareness and also funds to get her and their son, Liam, who also suffers from the disease, involved in a medical trial in New York.

Although Saoirse travelled to New York for extensive treatment she was not accepted into the trial medical treatment. Her parents are still hopeful that Liam will be accepted into the trial this year.

Last week her parents, Mary and Tony, made a substantial donation to the Jack and Jill Foundation (who have been aiding with home care for Saorise) after doctors told them there was no hope for their little girl.

At the time, Tony said “Saoirse has no recollection -- she's in a different place. She's lost the ability to move and communicate. All she can do is move her eyes from side to side and her eyelids…The doctors have told us that she's starting to grow her angel wings and there's nothing we can do about it.”

Visit B for Battens for more information

Read more: Brave Saoirse begins to grow her ‘angels wings’
 

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10 Comments

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msdsandpiper | Jan 21, 2011, 12:58 AM EST
I think it is totally inappropriate for qwhekjqhwe to advertise an online wholesale supplier, in this comment section. It is inappropriate and does not warrant the "support and trust" it seeks!

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sully1167 | Jan 20, 2011, 02:07 AM EST
God bless Saoirse, may the Lord hold her in the light.

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msdsandpiper | Jan 19, 2011, 03:02 AM EST
I am saddened to hear of sweet Saoirse Heffernan's passing. My heart goes out to her family and to all those whose lives she touched. Now their little angel is an angel to us all. I thank the Jack and Jill Foundation for aiding in Saoirse's home care. And, I pray that the New York Clinic will not fail her little brother Liam with his needed medical treatment.

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JimThompson | Jan 18, 2011, 09:58 PM EST
It is a crying shame that the little gal had to die; es-pecially after all the time and effort everyone went through to try to save her. Hope that her brother will get a better chance in life.

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DennisQ | Jan 18, 2011, 06:45 PM EST
God help her family. They've been brave throughout.

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Dublinjas | Jan 18, 2011, 05:11 PM EST
Sincere Condolence to Saorise parents on the loss of their little Angel, they will see her again, Rest in Peace.

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millstreet | Jan 18, 2011, 01:56 PM EST
She is now their angel....

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Searlit | Jan 18, 2011, 12:43 PM EST
Rest in peace, Brave Angel Saoirse.

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sirpeter | Jan 18, 2011, 11:56 AM EST
R.I.P

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marctmatt59 | Jan 18, 2011, 09:17 AM EST
As a descendant of an Irish great-grandmother from Kerry Ireland, Hannah Heffernan, I have found this story especially touching. As I am actively trying to find my ancestral Heffernan relatives, and I find it heart wrenching to hear of a beautiful Heffernan child passing well before her time. Your article should have posted a location for donations for those who would like to contribute to this family to help in their plight. MarctMatt59

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