Awareness makes a difference

Why I spread awareness for Osteogenesis Imperfecta, aka brittle bones....

As a mom with daughters that have OI, I have to constantly advocate for their healthcare. Not all fractures show on xrays, nor do doctors know they should splint a suspected fracture. 

When I am in public, and my children are splinted or casted, you wouldn’t believe all the looks I’ve been given. When Aurora had two broken tibias when she was two, we had a man come talk to us and basically insinuate we hurt our child. As a person with an anxiety disorder, this really affects me. Having people assume I hurt my children. People judging, staring and looking at me weirdly because my children have broken bones. 

Many parents have had their children taken away for suspected abuse. Sometimes even when a diagnosis of a bone disorder is determined, and that would explain the suspected fractures, they still have to fight for their children to be returned home.

Shriners Hospital in Montreal have been so amazing to my daughters!!! Many children from all over the world attend their OI clinic. If it wasn’t for the Shriners & the fundraising they do, many children would have gone without optimal care. I’ve heard people say that they are the world leading in OI care.

There are many different types of OI, but even those that fall under the same type are not the same. We call our OI children snowflakes because they are all unique! One person with type 1 OI could have very little fractures, while another person with type 1 could have 50+. 

Having OI doesn’t mean you have to worry about just broken bones... it can effect Ligaments, hearing, teeth (dentinogenesis imperfecta), bowing of the limbs, scoliosis, respiratory problems, short stature etc...

Why do I raise awareness .... because awareness makes a difference !!!