The Buzz Blog - Liams Lodge
Parents launch Ireland’s first Rare Disease Respite Centre
30 per cent of children with rare diseases die before their fifth birthday
Today sees the official launch of the new site for Ireland’s first National Respite Centre for children affected by rare diseases and genetic disorders and their families. The centre will be built in the scenic location of Blennerville in County Kerry, on the outskirts of Tralee Town.
The centre, called ‘Liam’s Lodge’, is the dream of parents Tony and Mary Heffernan and is named after their son, Liam (4), who is suffering from the extremely rare and fatal Batten Disease. Tony and Mary’s daughter, Saoirse, passed away in their arms aged five in 2011 from the same disease.
Kerry’s Jimmy Deenihan TD, Minister for Arts, Heritage and the Gaeltacht and broadcaster Miriam O’ Callaghan will launch ‘Liam’s Lodge’ today, with special guest of honour Liam Heffernan and his parents Tony and Mary.
Up to eight per cent of Irish people are affected by rare diseases. About 70 per cent are children, from which 30 per cent will die before reaching their fifth birthday. With potentially over 200,000 children affected by rare disease in Ireland*, with no designated centre for rare and genetic disorders, Liam’s Lodge is a very welcome addition to Ireland’s health infrastructure.
“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 Heffernan.
The Heffernans hope to welcome the first families to Liam’s Lodge in 2015 and have a comprehensive fundraising plan in place. The centre needs to raise €4.5 million to complete. The charity plans 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.
“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” said Tony.
There are over 6,000 rare diseases on record with up to 10 new diseases being recorded worldwide every week. Up to 50 per cent of children with rare diseases are highly dependent, often requiring round-the-clock care. **
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.
An ideal location, Tony and Mary have searched for over a year to secure the scenic Blennerville site, located just two miles from Kerry General Hospital and close to a host of recreational amenities, all totally accessible for wheelchair users.
“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 really 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” concluded Tony at today’s launch.
For more information or to donate, please see www.liamslodge.com.
For more information or to arrange interviews, please contact:
Mary Tallent, Purcell Masterson on 085 8018946
John Masterson, Purcell Masterson on 086 2448692
Batten Diseaseis one of the world’s rarest diseases. It affects only a tiny number of children in Ireland and is believed to be greatly undiagnosed. Batten Disease causes children’s bodily functions to slow down, including speech, ability to eat, mobility and loss of sight, it is always fatal.
* European Organisation for Rare Diseases (Eurordis)/ Department of Health and Children
**Irelands Rare Disease Task Force