For Salisbury couple Michelle and Con Fourkiotis, their little boy is truly a miracle. For him to have simply celebrated his tenth birthday, one that doctors said may never come, was a milestone in itself.
Their son ten year old Eamonn Fourkiotis has been diagnosed with the extremely rare Alpha Thalessemia Mental Retardation syndrome. So rare, in fact, he is 1 of only about 125 people in the world who have it. Typically, the syndrome has left him visually and intellectually impaired, unable to even stand or walk.
With four children 12 and under, Michelle works four days a week while her husband Con works full-time.
“At the moment we have to carry him around and he has no muscle tone so it’s like carrying 20kg of dead weight. He’s a very happy child but he is reliant on us for everything except breathing.”
Michelle said the disease was a degenerative condition, but Eamonn had already outlived the initial estimates doctors put on his life.
“He was originally only expected to live until he was five but he’s still going”.
The couple pay a carer to look after Eamonn after he finishes at Buranda’s Narbethong Special School each day.
It was when the Fourkiotis family approached Variety – the children’s charity, in the hopes of raising money to buy life-changing equipment for their son that a chain of reactions occurred. Publicity surrounding the family’s situation contributed to much needed donations resulting in the provision of a new chair that allowed Eamonn to eat with his family for the very first time.
It was this story that prompted Alpha Car Hire co-owner Jacquelynn Miller to host the Swap&Shop event and other initiatives, with the view of raising an additional $100,000 for the charity.
With Variety receiving over $250,000 worth of appeal requests every month in Queensland alone and currently reporting over $500,000 worth of unmet requests from families like Eamonn’s, fundraising events like these are all the more important.
“The Fourkiotis family is trying to generate funds for a specially modified vehicle to accommodate Eamonn’s wheelchair,” explains Miller.
“Of that, there is still so much left to raise. Your heart just goes out to the family and Eamonn, and we hope that this event will help them reach their needs and others through Variety.”
Swap&Shop Brisbane Charity Night was on the 17th of July. It was about swapping pre-loved clothes and building a whole new wardrobe, all in the name of charity. With live acoustic entertainment, prizes up for grabs and champagne on arrival, it was definitely a night to remember.
“Knowing that Swap&Shop could make such a difference to the lives of children like Eamonn is what keeps you going. We hope that people see that,” Miller says.
“With 100% per cent of the proceeds going to Variety, it was a night to sit back, have fun and enjoy… all while changing the life of someone else for the better.”
Story also featured on Mamamia Cares here.