My name is Michel and I am 25 years old. I come from a very small town in northern Wisconsin but have recently moved to St. Louis, Missouri.
I was born in November in 1991 to my wonderful parents, Michael and Christina. During my mother's pregnancy, doctors noticed through an ultrasound that there appeared to be some bowing in the lower extremities. When I was born, I had two fractured ribs and was having some difficulties breathing. My doctor decided to do an x-ray.
During the x-ray I had just happen to flinch and my arm got into the x-ray. That's when the doctor noticed the bowing in my arm. Immediately, a full body x-ray was done and showed that the bones in my legs were also bowed. Two days after I was born, I was transported by ambulance to Madison, WI (a five hour drive) and was seen by numerous doctors to try and figure out what was going on.
Once at the hospital in Madison, a spate of testing began: a CT, blood draws, and x-rays. My parents had their blood drawn too to help find a diagnosis. This helped later to help identify the Jansen’s gene.
At first, doctors thought I had I-cell disease which meant I would die by the age of two. However, that was later ruled out. After many weeks of testing at two months old, I was confirmed the 21st case of Jansen’s Disease. I was diagnosed by a doctor out of California on the basis of World Literature.
From then on, my family and I traveled back to Madison at least twice a month for the first few months of my life. Later, the visits became every three to six months for further testing. I had to drink a special formula to control my calcium levels, and sleep on an egg crate mattress. Diaper changing for my parents didn’t come easy either. My parents had to log roll me every time as they weren't able to lift me by the legs like with other babies. My bones were fragile and I ended up with a few fractured ribs while at home. Doctor's told my parents it could of simply happen just by changing my diaper or giving me a bath. My parents were very protective of me as a baby and there were very few people that were allowed to hold me. I was rarely let alone in the care of someone else.
At the age of two, I had my first leg surgery to help straighten my legs and would attend therapy until I learned to walk. Post-surgery, I finally took my first steps with the assistance of a walker. I continued to use the walker until about age three. After that it just became a fun thing for me to do tricks on. From then on, I had more leg surgeries at the ages of 4, 6, 8, 10 and 13. At the age of 11, I had my first spinal surgery to help straighten my spine.
During these years, I would go to the doctor monthly for a blood draw to watch my calcium levels. I was limited to the things I could eat such as milk, cheese, yogurt and nuts - all of my favorite foods. I took a medication to help with the calcium levels and would have an ultrasound done once a year to watch for kidney stones. Then once I was older, my calcium levels eased out and I could eat what I wanted and no longer had to take a medication. However, I still get an ultrasound done every few years.
When I was a little older, my parents began to let me call the shots in regards to surgery. It was my choice if I was going to go through with an operation or not. I always agreed to what my doctors thought was best for me.
Growing up my parents always treated me like any other child. They encouraged me to be as independent as possible and told me I could be anything I put my mind to. I never lived in a bubble; I was never told I couldn’t do this or do that because I had Jansens. And for the people that always told me I couldn't, I proved them wrong. Very wrong.
I was teased a lot as a kid and times were not always easy, but I learned that those who bring you down are already below you in life. Though life can be a roller coaster at times with the ups and downs, I've learned to keep my head held high.
Now, I'm twenty five years old and starting a new chapter in life. I've moved to St. Louis where I will finish out nursing school. The program is two years long and will probably be the longest two years of my life. However, I am looking forward to it. After nursing school, I plan to work in pediatrics at a children's hospital. And to top it all off, I am getting married in October of 2018 to my fiancé, Andrew Hardy.
A lot of people may look at having Jansen's as a disadvantage, but I believe it was something that was meant to happen to me and it has shaped me into who I am today.