Addyson was not accepted into NIH’s UDN. We are not completely shocked However we had hoped.
They pretty much stated that they agree with her mito diagnosis and that they would be doing everything we are already doing so they don’t see where they could offer any other treatment options. it’s nice knowing we are doing what we should be but it brings up the realization that there isn’t any other better treatment out there. 🙁
They also are frustrated (as are we) that she a severe vitamin D deficiency. They sad it is dangerously low and needs to be corrected asap and vitamin D this low can impact her immune system function and response to inflammation. She’s on 4000 iu of vitamin D a day but still not in normal range yet
Her ferritin/iron is still really low and kki still hasn’t gotten her scheduled for her infusions which is beyond annoying. (I’m emailing them again today)
Beaming with hope 