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.
It's my life ... 
Tks for explaining OI … interesting.
Fortunately you are enjoying a full and happy life :))
Often the strongest materials known to man were forged in fire.
Hey there..I ran into this post, and really felt the need to reply. I myself (you can read more about me by clicking my username..but I’m not too interesting!) have OI as well. I have type 3..and am indeed in a wheelchair. Strangely, I too had the option of the pins in the leg/arms..but never had it done. My mom wanted to wait for me to choose as well, and truthfully, I don’t think it would have done much. I’ll never walk, which is perfectly fine..so there isn’t much need for all the painful surgeries. None the less, I live a perfectly normal life..go to college..have friends, and all that. I’m 25, and I’d say quite healthy. I’ll also say I haven’t had a broken bone in years (though I had several throughout my childhood..from ribs..to arms..legs..etc). I was also born with a fractured skull and a broken leg. None the less..I’ve found that at about age 16 things really started to slow down with the breaking, and I have found that my bones have become far stronger. I can do things which I never could..including getting out of my chair, in it, etc. I can’t walk, but really..it doesn’t affect me in a negative way.
Anyway..I rambled..I always do..haha! It was interesting to see someone else who has OI. I hope all is well..and perhaps we could talk some time.
((sorry for the double post..I meant to post under my actual account..))
Bye for now!
-Joe
My husband was born with OI which was passed to him through his father. He also has a younger brother that has it but his other two younger siblings don’t have it. We have three children together and our first two don’t have OI but our youngest does. She apparently doesn’t have it as bad as everyone else on here because she is able to walk and be a normal little girl. But recently the doctor told us about a shot that she can get each month to help strengthing her bones but she has not broken any since she learned to crawl so we have held off on it. I was wondering if even tho my kids don’t have OI if they could still carry the gene and pass it on to their own children?
I don’t mean to sound naive but I just recently learned about OI when I read Jodi Picoult’s book titled “Handle with Care”. I was so moved by that I did some research on my own about this condition and I am so incredibly inspired by you.
Wishing well for you always. I just stumbled upon your blog so I’m looking forward to diving in now. Take care! xo.
Hi Gia
Thanks for stopping by. Hope you stop by again and read further 🙂
Hi! I did a search on the net for “Osteogenesis Imperfecta in the Cunningham family” and this came up. I too have OI, Type 1A in the old setup (in the new and old classification).
When my mum found out I would have the condition, she was given the option to have an abortion, but she didn’t and I am very glad of it.
I have a older half brother and a younger brother who have the condition. Our dad had the gene, and his sister did too, but his brother didn’t. Looking further back, my great-great grandmother had an affair with a man with the condition. She had two girls, both had OI. One of them, my great grandmother, gave birth to four boys. Two had OI and two didn’t.
My mum was also given the opportunity to have Sheffield Rods inserted into my limbs for extra strength. She took up that offer so I have one in my left tibia, one in each of my femurs. I also have a wire in my left ulnar and another type of rod in my right tibia.
Thank you for reading,
John Cunningham