The Buzz Blog - Liams Lodge
Bee For Battens are pursuing the developement of a state of the art respite centre for children with Rare Disease. The charity have entered in a contract to purchase a 5 acre site located less than a mile from Kerry General Hospital.
The centre, will be the first of its kind in Ireland and only one of a handful in Europe. The facility which will be designed to initially accommodate 10 families a week and offer them a purpose built respite centre in Irelands leading tourist county, Kerry. In total upto 520 families could be accommodated annually.
Initial discussions have taken place between Kerry County Council regarding the proposed developement.
The charity are hoping to approach the HSE and Dept Of Children regarding developing a partnership for the operation of the facility.
The centre, which is being tagged as "Liams Lodge" will be built by The Saoirse Foundation, the charity behind Bee For Battens. Tony Heffernan, a founder and CEO of the charity is hoping to use the "Niall Mellon Trust Charity Model" to build the facility and will be asking tradesmen, builders and suppliers to get behind the facility and donate their time and products.
Fundraising for the event will be coordinated by Saoirse Foundation and Bee For Battens, with support from other charities and rare disease organisations being asked to support its developement.
Tony Heffernan, who represents all patients and parents affected by Rare Diesease on a Dept of Health Steering group, tasked with the development of Ireland National Plan and Strategy for Rare Disease.
With over 7000 known rare diseases, with tens of thousands of people affected in Irelnad alone, this facility would go along way to allow children affected and their families seek some respite at home. Particularily important as the more severely affected children are unable to holiday abroad due to their severe symptoms.
Between 6-8% of The Irish Population have a Rare Disease, thats about 360,000 , 275000 are kids.
For more information or to offer your support please email, firstname.lastname@example.org
We urge anyone affected with rare disease to lobby their local councillors and TD's to ensure that this facility goes ahead.