My name is Corban Levi and I was born with a rare genetic condition called Sheldon-Hall syndrome. Along with it, I have something called arthrogryposis multiplex congenita, which means that my joints are contracted and my muscles are very weak. I have also been diagnosed with something called bicoronal synostosis, which makes me a "cranio-kid," as they call it.
Because I didn't move much in my mommy's belly, my bones were weak and 4 of them broke at birth. My hips were dislocated too, but after a long 9 hour surgery, they're in place.
I had tons of fluid on my lungs after I was born, and had to have multiple sets of chest tubes for over 8 weeks because of it. I had trouble learning how to eat and and how to breathe on my own (still working on the eating part).
Because of all these things, I spent the first 5 months of my life in the NICU. It was a roller coaster ride, and there were days when no one knew if I would make it out alive. But just 5 days before Christmas, I finally got to go home!
I just celebrated my 4th birthday, and am so glad to be living life with my mommy, daddy, brother and sister who love me very, very much. They say I am their extra special gift from God, dedicated back to him. And I say, that's PERFECT!