But this family also received some additional perplexing information in that their son seems to have a glycogen storage problem (another metabolic disorder) on top of everything...the question is whether this is a disease in conjunction with mito or something completely separate. I am sure this family would appreciate your continued prayers as they try to continue to figure out the answers to these questions.
Liz (the good mama of this family) and I have spent hours emaling back and forth daily and talking on the phone to eachother a few times, and I truly look forward to meeting her this summer at the Mitochondrial Disease Symposium in Washington DC. In fact, we are going to be roomies. She has been such a blessing to me over the past few months as we have tried to solve the mystery of our boys, and I look forward to actually meeting this dear friend of mine.

1 comments:
Will keep praying! For both of you!
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