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Brave Liam's family plan respite lodge

THE father of a toddler who suffers from Battens disease hopes to open a new respite centre for children with rare diseases where they will find peace and fun.

Tony Heffernan and his wife Mary know the hardships of rare and terminal diseases better than most.

Earlier this year, they travelled to the US so their three-year-old son Liam could undergo pioneering surgery that could save him from the neuro-degenerative disease that killed his sister Saoirse (5) in January.

Liam's condition has so far improved enormously and he and his sister have inspired the brave family to make plans for Ireland's first respite centre.

"We have been thinking about this for the past two years now," Tony told the Herald.

"We first set up the charity Bee for Battens so we could raise awareness, and almost straight away we were in contact with [people working on] the country's first children's hospice [which opened last Thursday].

"The centre we are looking to build will be a little respite village that will give children a home away from home, where they will never feel singled out.

"We know from experience that children like Liam find it very hard to travel.

"So this will give them the holiday or time with their family that they need. We hope they will be able to have fun."



VOLUNTEERS

Bee for Battens has already selected a suitable five-acre site for its project and negotiations are ending.

"We have entered in a contract to purchase a site that is less than a mile from Kerry General Hospital.

"The centre will be called Liam's Lodge and at first it will accommodate 10 families every week. We hope that with time, we will be able to triple that number since 8pc of the population suffers from a rare disease and there is simply not enough resources for them to benefit from this type of care."

Dozens of volunteers have already contacted the Heffernans to offer their services.

hnews@herald.ie