Oh no! That is just awful. I just got the most beautiful rosary at Sacre Coeur in Paris - this is an excellent reason to break it in. I will say many prayers for the little one.
I know a decent amount about OI actually- one of my former coworkers now directts their fundraising foundation. Let me know if there's any way I might be able to help- if you have any questions or anything, he might know. I bet he knows a decent amount about the new treatments actually, since that's basically his job... feel free to pm me if you want.