Monday 11 December 2017

'Our son Liam passed away on our wedding anniversary... now we have a happy day' - children's respite centre gets go-ahead

Tony and Mary Heffernan sitting on their son Liam's bed where he passed away in 2014 from Battens Disease. His sister Saoirse died in the room next door from the same disease in 2011.
Tony and Mary Heffernan sitting on their son Liam's bed where he passed away in 2014 from Battens Disease. His sister Saoirse died in the room next door from the same disease in 2011.
Geraldine Gittens

Geraldine Gittens

“Three years ago our son Liam passed away on our 13th wedding anniversary and since then we’ve been hoping for a “happy” day to mark in the calendar. This news from An Bord Pleanala is the perfect news to cap off a brilliant week.”

These are the words of Tony Heffernan, who lost his son Liam and his daughter Saoirse to a degenerative disease called Battens disease.

Last week, An Bord Pleanala upheld the Planning permission granted by Kerry County Council  earlier this year to allow the construction of “Liam’s Lodge” a new national respite centre for children with complex needs, genetic, rare & life limiting disorders in Curragraigue, Blennerville, Co Kerry.

The €14m respite centre will cater for over 1,000 families a year when it opens in 2021.

It will provide national respite, and palliative care supports for children primarily from the west coast and Munster areas.

“We are thrilled that planning permission for Liam’s Lodge has finally been granted. We are really eager now to get this facility up and running as quickly as we can because we know just much a facility like this is needed," Tony said.

"We aim to staff Liam’s lodge with loving care givers who will provide the best of care to our special guests allowing Mom and Dad and healthy siblings to take a break, relax and spend some quality time with their family in a quiet, nurturing environment."

"We have personal experience of the challenges that caring for a seriously ill child with complex needs can pose for the whole family and we know how much this kind of respite care is really needed.”

The facility, the first of its kind in Ireland, which is being spearheaded by the Saoirse Foundation (https://www.saoirsefoundation.com/) will include eight three bed family residential lodges, 14 two bed residential family lodges, a reception area, four therapy rooms, two sensory rooms, five physiotherapy suites, three offices with meeting rooms, a playroom, a cafeteria and staff facilities.

Tony's wife Mary added: “In recent years Tony and I lost both our children Saoirse and Liam to Battens disease when they were just five years old."

"We understand only too well how families caring for seriously ill children could do with a place to go to recharge their batteries and allow their whole family time to relax and be looked after by people who understand their situation and needs. That’s what Liam’sLodge will be. We’re now going to go full throttle at fundraising to get this facility up and running as quickly as we can.”

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