Tuesday, July 30, 2013

Update on Helena

TYou may be wondering, How is Helena doing?  

Well, here's the news.  After arriving back in Mwanza from a great vacation in Seattle visiting friends and family, we checked up on Helena and found out that, low and behold, her other femur had broken.  It seems she was trying to move her leg with the external fixator on the tibia, and the weight of this fixator snapped the bone.  This, along with the blue tint in the whites of Helena's eyes, has given Dr. isidore enough evidence to conclude that Helena has Osteogenesis mperfecta.  

Mom and Dad taking Helena down the stairs to the hospital to get her fixators removed.

Osteogenesis Imperfecta, or OI, is a genetic condition causing a deficiency in collagen making the bones brittle.  Straightening of bowed bones is a helpful operation, but now we now see that Helena needs special treatment to strengthen her bones by using biphosphonates.  

Trouble is, as you might have guessed, biphosphonates are hard to come by in a society that doesn't always have child doses of pain medecine!  So,  of late, we have been on the web and on the phone trying to find an organization that can help us obtain these valuable, but hard to come by drugs

The situation is further compounded by the fact that she will have to take this treatment at least through the end of puberty.

Your prayers have been and continue to be much appreciated.  Oh, and if you know of a doctor who has any experience in OI, and a benevolent heart, please pass on our contact info or tell them about this blog.

While we were in the US, our good friends Chris and Katie took up the charge of taking Helena to the hospital for her doctor appointments and x-rays.  To read more go to http://waldiesworld.blogspot.com/2013/06/busy-weeks.html

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