GAA supports Liam's Lodge respite centre
‘Liam’s Lodge’ has been announced as one of the GAA’s five chosen charities to receive funding in 2013. The Kerry based charity ‘Liam’s Lodge’ is set to receive funding of €20,000. The GAA has pledged this money to ‘Liam’s Lodge’ to help towards its highly valued work which the GAA is keen to support.
'The GAA is delighted to support Liam's Lodge, it is a fantastic project and, like the GAA, rare disease is in every community throughout Ireland. We pledge the support of the entire GAA organisation” said Liam O’ Neill, President of the GAA, at the presentation of the cheque to founder of ‘Liam’s Lodge’, Tony Heffernan.
This funding marks a great start for ‘Liam’s Lodge’ whose site was launched at Blennerville recently by RTÉ’s Miriam O’ Callaghan and Jimmy Deenihan TD, Minister for Arts, Heritage and the Gaeltacht. A major boost for Kerry in terms of job creation as well as a vital addition to Ireland’s health infrastructure, ‘Liam’s Lodge’ is Ireland’s first National Respite Centre for children affected by rare diseases and genetic disorders and their families.
Being developed by parents Tony and Mary Heffernan from Keel, Castlemaine, ‘Liam’s Lodge’ is named after their son, Liam (4), who is suffering from Batten Disease. One of the world’s rarest diseases, Batten Disease is fatal and affects only a tiny number of children in Ireland. Batten Disease causes loss of sight and severe seizures, eventually leading to a complete loss of all bodily functions, leaving the child totally disabled and dependent. Tony and Mary’s daughter, Saoirse, passed away aged five in 2011 from the same disease. The family has connections in Ashbourne.
“We have had huge support across Kerry and indeed across Ireland and beyond since we officially announced the Blennerville site as the location for ‘Liam’s Lodge’. To receive this funding and the support of the GAA is a huge boost and we are very grateful for their support” said Tony Heffernan.
“We have lots of work to do to build ‘Liam’s Lodge’ by 2015 and we are appealing for support across the county – for both fund-raising and those who work in the construction industry who could donate their valuable time and expertise as well as construction supplies.”
Liam’s Lodge will provide full respite care services in custom built family units, where loved ones with rare and genetic disorders will be provided with the care they need, while the child’s parents and siblings are given the chance to get some much needed rest and family time. The centre will provide families with a full week’s break with comprehensive care plans for each child, delivered by highly trained medical and care personnel. With ten units or ‘homes away from homes’ in phase one, Liam’s Lodge will cater for 520 families each year initially. A further two phases of similar size will be added later, allowing Liam’s Lodge cater for over 1,560 families a year.
The Heffernan’s searched for over a year to secure the scenic Blennerville site, which is located just two miles from Kerry General Hospital. ‘Liam’s Lodge’ needs to raise €4.5 million to complete.
With potentially over 200,000 children affected by rare disease in Ireland and no dedicated respite services for these children and their families, ‘Liam’s Lodge’ is being hugely welcomed by families of children with rare diseases across Ireland.