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.
