This website has been created as a resource for parents and families of infants or children with Osteogenesis Imperfecta
(OI).
While many doctors may be knowledgeable in OI, there really are few experts. New and dramatic advances have been
made in the last few years that have greatly improved the quality of life for children with OI. Many doctors are unaware of
these advances or misinformed and are unable to give the family critical information that may better the life of their child.
It is our hope to bring this information to parents that they may be aware of all the resources available to help their children.
The information shared in this website is a collection of what many experienced parents of young children with OI feel
would be most important for another new OI parent to understand. It comes from first hand experiences with our children who
range from very mild to very severe. It is essential to realize that each child with OI is unique. We have found it most helpful
to learn all we can and then use that knowledge to aide us in making the best decisions for our child.
We also invite you to join our OI Parents email list where over 370 parents of children with Osteogenesis Imperfecta
come together to ask and answer each others questions and to offer support in caring for a child with OI. Please email oihope@gmail.com if you are interested in joining
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Mira (age 2, type I) on right with her family. |
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Isaiah, very front, (age 2, type III/IV) with his family |
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Jonathan, on left, (age 5, type IV) with his family |
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Jake, very center, (age 4, type III) with his siblings |
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