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RE: definitive Dx

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,

So glad they can now tap the greater body of knowledge. Hopefully that combined

wealth of information will lead to successful recommendations toward treatment

and helping you feel significantly better.

We are still waiting for the entire mitochondrial genome studies from Atlanta.

It has been two (almost 2 1/2 years) already. I some ways it won't change

anything, yet it would give us the full physician support at some medical

centers that has been lacking. It would also cement the girls decision to adopt

their children when they are ready to start their families.

Barbara Seaman wheatchild@...> wrote:

, Yes yes! You are now officially rare in several ways! Rare courage,

rare beauty, rare mutation. I certainly hope this leads to better

understanding of your disease pathology, and will in turn lead to more

options and help.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

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Hi , im so happy you finally have your diagnoses, knowing is

wisdom and wisdom is power, now they can help you even more!!! God

Bless!! Your in my prayers! Hugs to you! Barb

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