Heffernan family help sick children after loss of daughter Saoirse to Battens Disease
Liam’s Lodge to be a haven for families with sick children
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.
Irish Battens disease toddler will receive life-saving surgery in New York
New York medical trial gives hope to Irish Batten Disease boy
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.
- An open letter in strong defence of capitalism.
- Sarah Palin is saving Christmas
- Racist incidents in Ireland up by 85 percent...
- Gay teacher fired from Catholic school after...
- Irish drugs mule to escape full trial and...
- Virginia governor slammed by doctor over...
- Top Christmas Irish ads that will be bring...
- Nelson Mandela was against IRA decommissioning.
- Irish radio presenter suspended after anti-Isra
- Hollywood star Gabriel Byrne brands new Pope...
I wonder if the Governor of Virginia put up similar protests on behalf of his constituents when the slave trade was outlawed everywhere else but his mGay teacher fired from Catholic school after applying for same-sex marriage license
Stevenstar , I live in Ireland and I can emphatically say that 75% of Irish people do NOT believe in gay "marriage " . The idea is regardedNelson Mandela was against IRA decommissioning its arms during 2000 talks
You're right, Fergananim, about Americans not grasping the Irish weariness with IRA activities into the late 20th century. Americans find the idea ofAn open letter in strong defence of capitalism to Pope Francis
Yes, capitalism is very good at providing an abundance of low value items such as food and electronics, just so long as the State (the nation) provide