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Bee For Battens, The Saoirse Foundation To Help Fill the Pail!
Even though there are only a handful of families in Ireland who have children affected by Battens Disease, Bee For Battens, The Saoirse Foundation Charity has decided to step in to support Irish Battens Disease Sufferers and their families following a decision by the Jack & Jill Foundation to reduce & remove some services due to a funding shortfall.
In a letter to parents in December 2010, Jonathan Irwin Founder & CEO of The Jack & Jill Foundation stated: “with the last of our reserves running out and our donations significantly down…. leaves us with no alternative but to cut our home nursing care and respite service by up to 30 per cent from 1st January 2011.” Although it usually provides services only to children up to age four, Mr Irwin estimated up to 100 babies faced return to hospital in the short to medium term.
From the Bee For Battens base on the Dingle Peninsula, in County Kerry, the national Battens Disease Charity is providing a five figure funding grant to Jack & Jill. This funding will alleviate any loss of service to Batten’s Disease families across Ireland who presently & will need the valuable respite available from Jack & Jill nurses.
Jack & Jill provide frontline home care and respite services to 320 families of children who are born with neurological disorders with severe physical and intellectual symptoms.