THE parents of a four-year-old Kerry boy with an incurable degenerative condition have appealed to the public to help them build a respite home for sick children named after their son.
Tony and Mary Heffernan are hoping to welcome the first families to 'Liam's Lodge', Ireland's first National Respite Centre for children with rare diseases and their families, by June 4, 2015, the date of their late daughter Saoirse's birthday.
Saoirse died in 2011 after battling Batten Disease, a rare neurological degenerative condition that will also sadly claim the life of their son, Liam, who may not live to see the respite home named in his honour completed.
Tony and Mary, from Keel, who founded the Bee for Battens charity and Saoirse Foundation, now dream of building a €4.5 million respite facility for the families of children that suffer from rare diseases. The plans for Liam's Lodge were launched last Saturday by TV presenter Miriam O'Callaghan and Minister Jimmy Deenihan.
Tony is appealing to businesses, tradespeople and the general public to help make their dream become a reality, either by donating cash, providing their skills or materials for Liam's Lodge, which will be built on a scenic site in Blennerville.
""There are little to no Government supports for families of children with rare and genetic disorders and Liam's Lodge has no state support. We are appealing to people, businesses, families affected – everyone - to help support Liam's Lodge. It might not seem a lot to give families one week's respite each year, but we know from experience the benefits are immense and will make a huge difference. We all need Liam's Lodge, please help me build it," said Tony. "For years we have admired the generous Irish men and women who have travelled to Africa and other countries to build hospitals, schools, homes and orphanages. Now let's do it for Irish children affected by rare disease and genetic disorders" added Tony.
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 pre-agreed 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.
"Having lost our beautiful daughter Saoirse and with Liam deteriorating, we know first-hand what it is like to provide full time care to our children, with very little supports available. It is immensely stressful as well as utterly heart-breaking. One of the most important things you can do is to sleep and eat well to provide the best care for your little prince or princess. This is very difficult and Mary and I wish there was a facility to give families the break they need. If a centre like Liam's Lodge was available to us, we would jump at the chance" said Tony.