Mary and Tony Heffernan of Co Kerry are making strides to give back to other families with sick children following the loss of their five-year-old daughter, Saoirse, last January from the very rare Battens Disease.
The Heffernans are in the planning stages for Liam’s Lodge, a respite for families with ill children to be located in Tralee through their charity, Bees for Battens.
The Irish Independent reports that the Heffernans are resourcing energies gained from the Bee’s for Battens - The Saoirse Foundation, the foundation they created named after their daughter, to help raise funds for Liam’s Lodge, named after their three-year-old, son who also suffers from Battens Disease.
Liam, who is only three years old, underwent a pioneering brain surgery in May for the disease and is showing signs of slight improvement.
Battens Disease is a very rare and fatal inherited disorder of the nervous system. Tony Heffernan told The Irish Independent that he knows firsthand the struggles of having a child with a rare disease, and that in Ireland there are a “lack of services” to help alleviate the hardship.
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The respite is planned to be constructed in Tralee, where a five-acre plot has already been purchased through the charity. The first phase of Liam’s Lodge includes 10 family units, an education and visitors’ center, offices, a play area, and a two and a half acre wheelchair-accessible garden with a lake.
It is due to be completed in 2014, with a capacity for 520 families annually.
"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,” said Tony Heffernan, who also serves as the parents’ and patients’ representative for the Department of Health's ministerial steering group for rare diseases.
The Irish Independent goes on to report that up to eight percent, or 388,000, will be affected by a rare disease in their lifetime.