My name
is
Mark Wagner, founder of Special Bones. I have
Osteogenesis Imperfecta (OI).
My condition is
termed as Type I OI. This
is the mildest form of the disease. My dad had it, two
of my brothers have it, five nieces and
nephews who have it, and my two children have it.
There's 11 people in my family who have it. As
far as we know, we have the most members of one
extended family who have it.
Below
are the individuals in my family who have this
disease.
Over the years, my Mom kept count of how many bones each of
her kids broke. When she died in 2000, she had my
brother Bob with 127, my brother David with 60, and me
with 85. My Mom took a lot of pictures when we were
young to document our lives every time we broke a bone.
On the back of each picture she wrote information about
the picture, such as how we broke and on what date.
There’s a lot of history in these pictures. I
am currently in the process of writing a book about my life with Brittle Bones
and how I had to cope with it, especially when your
children have the same disease you grew up with.
Click on the images below
to view Brittle Bones through the eyes of my MOM.
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Here is an
example of life with hope because of the treatments now available
for Brittle Bones Disease |
Bisphosphonates
My kids received Pamindronate
treatments from University Hospitals Health System and
the
Rainbow Babies & Children's Hospital
from 2002 to 2004.
Currently, Elizabeth's z-score is at -1.0 which is
just low of the normal density range. Brendan's z-score
is at -1.5. Right now, he as well as myself are on
Fosomax with vitamin D.
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