Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. Not many people know about Mitochondrial Disease, there are few supportive treatments relieving symptoms but at this present time there is no cure.
Our mitochondrial cells are like power stations in our bodies, supplying the energy every cell needs to function. These cells make up our organs and tissues within our bodies. Shay’s cells do not have the energy to make his body organs work properly for example, if a car does not have enough battery power, the car will not start or suddenly stop, no matter how new that car is.
Shay is nearly 10 years old and this disease is progressing with devastating effects on his health. His one love is his Xbox and he is now having trouble holding on to things along with vision loss, hearing loss and overall muscular weakness. This is heart breaking to see and we want him to have the comfort and quality of life before it is too late.
We are raising funds towards a palliative care suite fully equipped to make Shay more comfortable, safe and have the independence he needs in his everyday life. Every single penny helps towards our goal for Shay and we would like to thank all of our supporters who have previously donated, thank you.