My five year old son Ruari has Digeorge Syndrome or 22Q deletion. He was diagnosed when he was approximately two weeks old following emergency open heart surgery. The first year wasn’t great, but he gradually got over some of his issues and grew stronger.
Ruari is facing more open heart surgery in 2012.
We are lucky to have him in our life, to most people he looks and acts normal so they don’t know there is anything wrong apart from being a bit short and so cute.
We will never stop worrying about what is around the corner, but one of his cheeky, wee smiles and kisses make it all worthwhile. We love him more and more every day.