Up to 8 per cent of Irish children suffer from rare diseases. Their lives and those of their families are constantly consumed by the enormity of the treatment, therapy and medication they have to endure on a regular basis. But last Friday the official go-ahead was given to build a respite centre aimed at offering support and help to those who need it most.
Liam’s Lodge will be built on a site located next to Kerry General Hospital and will offer respite to more than 520 sick children and their families each year caring for their medical, emotional, educational and recreational needs.
The centre, which will be named after Tony and Mary Heffernan 's son Liam, is a result of their tireless devotion and fundraising. It will be built in memory of their daughter Saorise who suffered from Batten 's disease – a rare neurological condition – and died when she was five-years-old, and four-year-old Liam who also has the condition and a similar life expectancy.
Although Tony and Mary are battling every day to prolong their son ’s life, they have first-hand experience of the need for a respite centre so have spent years setting up a charity and planning the facility which will help other children with rare life-threatening illnesses.
"You feel very isolated when you are told that your child is going to die, " says Tony. "We were given no written information or future advice on what to expect with the condition after Saoirse was diagnosed. So we started our charity Bee for Battens in March 2010, to ensure that no one else would be left in the same position we were.
“One of the best things you can do for exceptionally ill children and their families is to give them rest and respite – tiredness and exhaustion take a huge toll on the body and mind, so by building Liam ’s Lodge, these sick children and their families can have an opportunity to take a break. ”
As their little boy deteriorates on a daily basis, this extraordinarily selfless couple are paving the way to prevent other parents from having to go down the same lonely, uncertain route as they watch their child slip away from them.
“We know first-hand what it is like to provide full-time care to our children – it is immensely stressful as well as utterly heart-breaking, ” says Tony. “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 .”
Through their charity, the Kerry couple have raised enough funds to start building the lodge but it will cost €4 .5 million to complete the project. They plan to replicate the Niall Mellon Trust model appealing to tradesmen, builders and companies in the construction industry to get involved, which would significantly reduce the costs, but as the project has no Government funding , a lot of money still needs to be raised.
“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 the children of Ireland affected by rare disease and genetic disorders ,” urges Tony.
“We need as much help as possible to keep our services going . So whether it ’s through fun-runs, cycling or coffee mornings, please think of us as it could make all the difference to a sick child ’s life. ”
For more information or to make a donation, visit www.liamslodge.com
