This week is OI Awareness week. Where only 20,000 to 50,000 in the U.S have OI it is a rare disease. Most people haven't even heard of it. Doctor's lack information on it. This Sunday their will be a boy with OI on Extreme Makeover: Home Edition. It's on ABC at 7:00 pm. I am so excited for all the awareness this will bring!
Due to only 20,000-50,000 people in the U.S having OI the National Institute of Health has labeled it an orphan disease. Which means not enough people in the USA have this disorder to justify a significant research budget.
All treatments for OI are still on clinical trial. The treatments they have started are only for severe in kids. They said Connor breaking his leg once a year is not enough to start it and he would have to have 3 fractures in 1 year. Their is still a lot of research being done and they need more funding for it. I have never asked anyone to donate for anything but if you can please do! No pressure just if you can. All proceeds provide funding for research into the causes, diagnosis, treatment, prevention, and eventual cure for Osteogenesis Imperfecta. No donation is too small. Click here to donate
I have a lot of cute pics of my kiddos and will be doing an update soon!
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