Rauri - Digeorge Syndrome
‘MEET RUARI!’
My five year old son Ruari has Digeorge Syndrome or 22Q deletion. He was diagnosed when he was approximately 2 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. He 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.
Sharyn Brown
United Kingdom
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Thats lovely sharyn. Love Rurai’s story and your description of his loving nature. He is a gorgeous boy.
You are right we are so lucky to have our kids. xx
Your son sounds amazing, and is adorable! I live with 22q11/VCFS/DiGeorge Syndrome and I am 27 years old, going to be 28 soon. At ten weeks of age I had open heart surgery, and almost had it again when I was 25. My doctor decided to not put me through the surgery because they my situation was not as threatening as they thought. Since I don’t know your son’s situation thoroughly, and I can’t say that everything will be okay, I can promise you he is full of hope and possibilities. I was taught to not fear the things we can’t control, and to focus on the abilities I possess, and tell him to always believe in himself. Though I live with serious health issues too, I still managed to find success in my fashion design career. Anything is possible when we focus on the positive, our abilities, and believe in ourselves. Take everything one day at a time. If you have any questions or just want to talk, don’t hesitate to message me.
I have a 15 year old that was diagnosed with di George when he was 3 months old. He has recently had his 3rd open heart surgery and he too used to be little and cute. He has problems mixing with his peers, always has. But would’nt change him for the world x