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What is
Osteogenesis Imperfecta (OI)? It is called a brittle bone disorder. OI means a lifelong
liability to fracture due to bones that are imperfectly formed. While the
exact number of person afflicted with OI in the United States is unknown, the best estimate suggests a
minimum of 20,000 and possibly as many as 50,000 people, which represents I
in 20,000 to 30,000 incidents identifiable at birth. At the
present there is no cure for OI. Treatment is directed toward preventing or correcting
the symptoms. This includes care of fractures, extensive surgical procedures,
including an orthopedic technique called "rodding" which involves
inserting metal rods in the long bones of the body to strengthen them and
prevent deformities. THIS STORY CONTINUES IN THE
MOTHER'S OWN WORDS "Osteogenesis
Imperfecta, better known as Brittle Bone Disease, is a disorder I had never
heard of before April 24, 1994, when our daughter Nichole was born with this
rare condition. We were told that our baby would have several broken bones
and deformities at birth and that there was also a good possibility of sudden
death, if her fragile bones could not support her life. The outlook was
bleak. Everyone, including the doctors in charge of our daughter's care, had
little experience with such a diagnosis. We automatically assumed that since
she was so brittle she would die in a short time. I thank God we were all
wrong! To
everyone's surprise Nichole arrived screaming from the first seconds of life!
Was she broken or in pain? To our relief the doctors said that other than the
obvious deformities of her legs, arms and chest, she appeared to be OK! Nicole has
had her share of broken bones including a leg, arm, jaw, brittle teeth, two
skull fractures and several others that we chose not to x-ray, but it hasn't
stopped her from overcoming many challenges including crawling, which most
children with Osteogenesis Imperfecta are unable to do. The mastering of
tasks such as crawling, walking and climbing steps are major milestones which
may have to be achieved again and again after an injury. Nicole is determined
to walk and frequently asks us why she can't yet. Parents of a child with OI need to have an
increased emphasis on the role of exercise for their child at an early age,
and to provide adaptations to physical activities when necessary. (These
parents also need to talk to their doctor about obtaining a note that they
can carry with them at all times, telling about their child's condition, so
that they won't be falsely accused of being abusive parents.) Although
Osteogenesis Imperfecta is a serious condition, most people with it can lead
productive happy lives. We have gained so much hope, knowledge and joy since
Nicole's birth, and know that she will strive to be the best that she can be.
The OI children we have
met from all over the United States have wonderful never-ending smiles and so
much determination to help conquer each situation they encounter. Nicole
loves to be the center of attention and she will find many ways to make
people laugh along with her. She is very small for her age of 2 1/2 years,
only weighing about 18 pounds, but she has an extensive vocabulary similar to
that of a 3 1/2 to 4 year old child. People frequently stop us in the stores
to find out how old she is because of her constant "chit-chat".
Nicole enjoys hosting tea parties for her friends and her many stuffed
animals. She teaches them all the songs that she knows how to sing. Her
favorite this week is the motorcycle song "Born to be Wild", which
she sings while riding on her toy motorcycle. HOW
APPROPRIATE! |