At the Saoirse Foundation we Make Positive Life Impacts For Sick Children.
Why are we doing this?
Tony and Mary Heffernan know what it is like to look after highly dependent children. Both of their children, Saoirse and Liam, were born with Battens Disease, a rare fatal neurological condition. Saoirse passed away in 2011.
Thousands of parents in Ireland face similar challenges from a wide range of rare and debilitating conditions. Many of the children will die young, but, while parents do struggle, they want to look after their child in their home. It is all consuming.
“It is immensely stressful. You are learning how to cope as the illness progresses and you just try to live through it. You need time and rest to recharge the batteries.” Tony Heffernan
In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people. In Ireland it is estimated that 6-8% of the population has a rare disease (around 280-370,000 people), 70% of all those affected are children.
The European Commission defines rare diseases as, life-threatening or chronically debilitating diseases which are of such low prevalence (fewer than 1 in 2,000 people) that special combined efforts are needed to address them.
Diseases that are statistically rare, but not also life-threatening, chronically debilitating, or inadequately treated, are excluded from the EU definition. 70-80% of rare diseases are genetic, and are present throughout the person’s entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and it has been estimated that 30% of children with rare diseases will die before reaching their fifth birthday.
As Tony and Mary know first hand a respite break is vital to recharge the batteries and give the whole family some time together in a relaxed and safe environment that understands their situation and needs. That is what Liam’s Lodge will be.