Site hosted by Angelfire.com: Build your free website today!


Hi, Welcome To Mona's OI Page.

We are very sad to say that Mona passed on November 3, 2003.
These pages will stay online in her honor and hopefully help others

My name is Mona and I have Osteogenesis Imperfecta or "Brittle bone disease"I was born in Germany in 1971 and at the time of my birth I had 136 broken bones, some inuerto (inside my mom) and some as I was born. I wasn't expected to live and when the doctor told my mom this she yelled at the doctor and got one fired for making such an assumption! I only weighed 2300 grams and I was about 42 centimeters long. The doctors said I wouldn't live at all, maybe 10 days max. After those 10 days they said I may live 3 years.

Here I am at 28 years old. I am 3 feet tall and 50 pounds. My voice is very high-pitched and my head is flat in the back because I was born with no bones in my head. Thankfully I have a beautiful head of blond/brown hair .(And people say I'm hard headed). I also cruise around in an electric wheelchair. If people don't move I'll run over their toes. I'm putting out this page so people with OI have a place to give their testimony, for those we love and those who love us to have a place to learn more about this genetic disorder And mostly so we can learn more about this. Because I look a lot younger than I am it's hard to put my self out there and look mature, an adult. Boy do I blow them away when they see I'm an adult!

The first page is about me, an introduction from my stand point. The second page is the medical terminology and diagnosis regarding OI and the levels of it.
Now more about me...

Not too much happened until I was about 8 years old that's when I really started to break a lot of bones. I had broken many before that time but 8 is when I remember going to a lot of hospitals and seeing a lot of doctors. I wore a lot of casts, that was normal every day stuff. I never left the house unless I was with a family member and I had a home tutor because my mom couldn't find a school at first. I wasn't even supposed to go to school! I started at age 8.. Then one day someone decided that I needed to do my own transportation. See up to that time I just sat where ever anyone put me down, drag man! Well I ended up back into a hospital to get fitted for a wheelchair. That was a joke. I had one manual chair, the kind you roll the wheels with your arms and hands, it didn't work I didn't have the strength. It wasn't even a full foot off the ground! My mom said no way because people could just step on me. It was not too cool.,The next chair worked by pumping it up and down to make it go. That was a no-go. See in Germany in 1979 you had to be really bad off to get an electric chair not like here in America where you can just get one. Someone finally figured out that  I needed the ELECTRIC wheelchair, by then I was 11. In the mean time I was sill always breaking bones. One time I had Whooping cough or something and I broke so many bones just coughing! My parents had divorced and my mom had married an American . We packed up our bags and moved here, Minnesota. From the age of 10 to 13 I was in a boarding school which I HATED at first. then it was ok. I had made some friends there for the first time so it was hard to leave it all behind. OI is so isolating. Here I was in a new country, 3 feet tall, in an electric wheelchair and don't know the language and have more stuff to look forward to. And I was only 13. This was 1984.

Basically I started school, learned English and here I am now. I went to High School and made some friends but they really didn't understand my situation. No one was shorter than me and I never saw anyone else that was shorter than me. I still break bones, not as much as I used to. My life is like everyone elses. I get around, hang out do things. I love music and my friends. I have things that bother me like all people, but most people don't have to deal with the thing that bothers  me the most is when they stare at me. What's up with that?

This is for people in my situation. Those of us who get constantly stared at, gawked at,and talked about. This is for those who don't understand, this is for us with Osteogenisis Imperfecta or Brittle Bones.

Read my Dreambook!
Sign my Dreambook! 		Dreambook

Facts on Osteogenesis Imperfecta

Links Page

Our Chat Schedule

We have a list at yahoo for people with all types of disabilities.
If you are interested in joining the list please click on the link below.

Click to subscribe to DISABLEDUNITE



Juergens, Ramona - Of Mounds View Age 32 Quietly passed away on 11/03/03. Preceded in death by Oma and Opa Baustian from Germany. She left behind mother Rosemarie; step-father Ron; father Lutz Dieter from Germany; sister Jennifer; step-brothers Daryl (Jennifer) and Mark (Patty); step-sister Corie; close friend Mary; and hundreds of family and friends whom loved her.
From The Legacy Newspaper






Back
This Osteogenesis Imperfecta Web Ring site owned by
Mona
[ Skip Previous | Previous | Next | Skip Next | Next 5 Sites ]
[ Random Site | List Sites ]

The OI webring is sponsored by Adventure Angling
Next