So, what is OI all about? OI stands for Osteogenesis Imperfecta, which, simply put, means that I have brittle bones. My bones break far more easily than an average person’s, though the last time I had a fracture was of my left femur on 26 December 2004. (Yes, the day of the Tsunami off the Asian coast.) It has been a while, but this is not because my bones have gotten any stronger. We have just been very careful.
Your next question is going to be about the movie “Unbreakable”. Samuel L. Jackson does play the part of someone with brittle bones. But, I strongly disagree with the movie, because I feel that someone with such a severe case of OI would not be able to walk at all.
Before I was born, both my arms and legs broke and rehealed in my mother’s womb. When I was born, on 6th October, 1978, the doctors told my mother that I would die of pneumonia before my second birthday.
Back then, not much was known about OI, except that it was hereditary. Both my mother and my father happened to have that specific combination to produce a child with OI. If I had to have children one day, they probably would not have OI themselves (unless Marc carries the gene as well), but would carry the gene and pass it on, in turn, to their children.
There was no support group for parents of children with OI. Not in Port Elizabeth. My mother joined a group for Downs Syndrome sufferers.
The doctors told my mother to handle me with pillows, among other instructions. She ignored them and treated me like a normal baby. The doctors gave her the option of having pins placed in my arms and legs. This would straighten my limbs and lessen the number of fractures I would have, but it would be purely for cosmetic reasons. She decided to let me make that choice when I was old enough.
I still have not had it done. I have full mobility, though I cannot walk, and am fairly independent to some extent. I do not really want to know what my life would have been like had I chosen to have the procedure. One thing is for sure, I would not have half the mobility that I enjoy now.
With the support of my mother, her parents and my stepfather, I grew up to have a fairly normal life. I frequently broke a bone and we stopped counting after 50 fractures. Unlike a quadruplegic, I never knew any other life, so to me, it was normal. It was a part of life and I managed. Thanks to my parents, I went to a normal school, which was wheelchair friendly. I was never treated as “strange” or a “freak”.
If you asked me to tell you one unhappy moment in my childhood, I could not. I had the greatest family (still do) and awesome friends. We nearly always had a dog and were never left wanting. I don’t think I would want to go back and change anything.
With the next couple pages, I would like to give you more information on what OI is about, as well as links to any useful information that I may find. Hopefully, it will give you more understanding about the disorder I have and who I am and maybe the information I find will help you, or someone you know in some way.