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Family helps other sick children after loss of Saoirse

Mary and Tony Heffernan at home in Keel, Co Kerry, with Liam (3), who is suffering from the rare Batten's Disease Expand
The Heffernans lost their daughter Saoirse (5) to the same condition in January Expand

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Mary and Tony Heffernan at home in Keel, Co Kerry, with Liam (3), who is suffering from the rare Batten's Disease

Mary and Tony Heffernan at home in Keel, Co Kerry, with Liam (3), who is suffering from the rare Batten's Disease

The Heffernans lost their daughter Saoirse (5) to the same condition in January

The Heffernans lost their daughter Saoirse (5) to the same condition in January

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Mary and Tony Heffernan at home in Keel, Co Kerry, with Liam (3), who is suffering from the rare Batten's Disease

Majella O'Sullivan Twitter Email

IT was their first Christmas without their beloved daughter but the Heffernan family is now focusing on a project for other families with sick children.

Tony and Mary Heffernan lost their daughter Saoirse (5) to Battens Disease -- a rare and fatal inherited disorder of the nervous system -- in January.

Saoirse's brother Liam (3) underwent pioneering brain surgery in May for the same condition and is showing signs of improvement.

Now the couple want to channel the energies of the charity they set up, Bee for Battens -- the Saoirse Foundation, to help fundraise for Liam's Lodge, a respite home for children with rare diseases and their families.

Plans for the first phase include 10 family units, a visitor and education centre, offices, a play area and a 2.5-acre wheelchair-accessible garden with a lake.

When it's completed in 2014 it will be able to cater for up to 520 families a year.

Already the charity has agreed to buy a five-acre site outside Tralee, Co Kerry, and hopes to lodge a planning application with Kerry County Council in the new year.

"We know what it's like to have a child affected by a rare disease and the lack of services there are in this country," said Mr Heffernan, from the family home in Castledrum, Keel, Co Kerry.

"Travelling is sometimes the biggest problem but at least now families will not have to leave the country and there will also be some medical equipment."

Mr Heffernan is the parents' and patients' representative on the Department of Health's ministerial steering group for rare diseases.

It is estimated that up to 8pc of the Irish population, or 388,000, will be affected by a rare disease in their lifetime.

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