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RTE Broadcaster Miriam O' Callaghan and Tony Heffernan Pictured at the official launch of the new site for IrelandÕs first national Rare Disease Respite Centre for children affected by rare diseases and genetic disorders and their families Photo by: Handout

Heroic Heffernan family hope to build ‘Liam’s Lodge’ respite care home for kids

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RTE Broadcaster Miriam O' Callaghan and Tony Heffernan Pictured at the official launch of the new site for IrelandÕs first national Rare Disease Respite Centre for children affected by rare diseases and genetic disorders and their families Photo by: Handout

Tony and Mary Heffernan are in a bid to open ‘Liam’s Lodge,’ Ireland’s first respite home for children who suffer from a range of conditions, from debilitating disorders to life limiting conditions.

The development is named after four-year-old Liam Heffernan, who suffers from Batten's Disease, a rare and fatal disorder that claimed the life of his sister Saoirse (5) in January 2011.

Now as his parents Tony and Mary face losing their second child to the same disease, they are hoping they their son can witness the completion of the project.

“Mary and I wished there was a facility like this for people like us, to give people the break they need. It is not a lot to give people a week’s break to help them to keep going through the year,” Tony Heffernan explained.

“Hopefully, Liam will get to see this open, but it's against the odds for him to survive more than 12 to 18 months," he added.

Located outside Tralee and close to Kerry General Hospital, phase one will see an initial ten specially designed units of Liam's Lodge constructed to provide a week of much needed respite for 520 families each year. In the longer term it will grow to thirty units on our site, supplemented by a number of satellite Lodges around Ireland. The service hopes to be helping over 1600 families a year in the near future.

Liam's Lodge will cater for medical, educational and recreational needs of the families during this special week. Families can also receive training in the extra skills required to care for highly dependent children. Siblings will enjoy quality time with family outings arranged and the on site "Dino" clubs with facilities to entertain teens and younger children.

Irish parents with children who suffer from Cystic Fybrosis,Duchene, Marfan Syndrome, Angelman's Syndrome and many other lesser known conditions will get much needed help from Liam's Lodge. It will provide a home away from home in a relaxing supportive environment, it will also allow parents to meet and talk with others in a similar position, knowing that we are looking after their loved ones

To find out how you can get involved log onto www.liamslodge.com

Liams Lodge, the launch, the need and we don't need reasons, just help to build it.

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