The photo above is of my first time ever visiting a playground and being able to stand up on the equipment!! I was so proud of myself as you can see!!
Hi, my name is Uriah and I very well could be the only person that you'll ever have the chance to meet who has Osteogenesis Imperfecta or Brittle Bones Disorder. When my Mommy and Daddy found out at the Anatomy Scan that something wasn't quite right about the length of my long bones (arms and legs), it began a journey that we continue to push through!
At my birth, I was diagnosed with OI. This means that my body did not produce an adequate amount of collagen which is the stuff that makes your bones harden. When I was born, the doctors noticed two healed fractures, one in my left humerus and the other in my right femur. Since they didn't (and sadly still do not know) much about my condition aside from what is printed in medical text books, they told my parents that if I lived 72 hours that I would be respiratory assistance dependent and would have to be carried on a pillow. I had a few tricks up my little sleeves! Not only did I survive, but I also have yet to have anything more than a common cold:Ha! They didn't realize that they couldn't speak that over my life because God had already determined my purpose.
Over the course of the summer of 2011, I experienced my first post utero fracture of my right femur. Sadly, that came at the hands of an overzealous x-ray technician that didn't listen to my Mommy's directions. This started what is known in the OI community as a fracture cycle. The overuse of my unbroken bone often leaves it susceptible to fracture because it's already weak. So, for 3 months I was in some form of a cast on either femur or even once being in a full cast from my chest down both legs! Trying times for all of us, but my smile and spirit kept my parents reassured that I'd be okay!
So, you wonder why I'm having surgery. In April, I will have two telescoping rods placed in each of my femurs that will help to stabilize my bones. In turn, this should practically eliminate any fractures or displacement and even possibly allow me to walk independently. I love my wheelchair though, so I'm sure I'll keep it around for a few wheelies! My Dad works really hard to make sure that I have the best care possible and because of my condition, my Mom is home with me full-time. We have amazing family and friends who have already contributed to help my parents with travel expenses and the overwhelming amount of medical bills that have already begun piling high, and you can join them. I hope you are able to help in some way, even if you just share my story with your family and friends! Check back here often because I'm making certain that my Mom keeps you posted on my progress leading up to and after the surgery.
Thanks for stopping by!
So sweet to read about Uriah. I'm wondering....have they given you a type? The way you describe his ultrasounds (shorts bones, although no bowing) along with a few other things make me think it is similar to what my little boy has.