herald

Thursday 21 November 2019

Family's big donation to charity as all hope for brave Saoirse runs out

GENEROUS: Heartbroken parents of Battens sufferer answer plea for help

THE family of Saoirse Heffernan, who suffers from deadly Battens Disease, have made a substantial donation to the Jack and Jill Foundation in their daughter's name, after doctors said that there was no hope for the little girl.

Saoirse (5) was diagnosed with the rare disease in September 2009, and she is now in a vegetative state and cannot communicate.

Her heartbroken parents Tony and Mary, who have spent a year chasing a cure for their daughter, are determined to make her final months happy ones.



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"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," said Tony.

"The doctors have told us that she's starting to grow her angel wings and there's nothing we can do about it."

The Jack and Jill Foundation has provided the family with much-needed care and support for Saoirse, and the donation was made after the CEO of the charity made a plea for help.

In a letter to parents in December, Jonathan Irwin stated: "With the last of our reserves running out and our donations significantly down, it leaves us with no alternative but to cut our home nursing care and respite service by up to 30pc from January 1."

And Saoirse's heartbroken parents are determined to keep the charity's services going for all children suffering from Battens Disease in Ireland.

Tony explained: "At the moment we have just the palliative teams calling in to manage the pain control. She's in a bit of pain and we have to manage that and keep her comfortable at the moment.

"It's not nice to see her in discomfort. We got new CDs for her, someone suggested natural wildlife sounds, so we got music of birds and the waves, and her eyes seem brighter when she's listening to that."

Tony and Mary are in contact with other parents who have lost a child to Battens Disease for some advice and help while Saoirse is under palliative care.

"I'm getting good support and good information. They're telling me what to expect, it's hard but invaluable, and at least you can trust it.

"You don't get much sleep, you'd be fairly tired, and it's taking a lot of time to mind Saoirse. We want her to stay with us. She's our little girl and we don't want her to go."



Saoirse travelled with her parents to New York for what they hoped would be life-saving surgery on October 12, after tests and dedicated treatment qualified her for it.



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But the family were dealt the heartbreaking news that she was too heavily medicated and she didn't meet the hospital's requirements for the treatment, and they had to come home again.

Since then, Saoirse has rapidly deteriorated and there is no longer any hope that she will survive Late Infantile Battens Disease, a rare neuro-degenerative condition.

hnews@herald.ie

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