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mitochondrial disease

You did good.

Today, heaven gained two amazing mito fighters. Today, two little boys, from totally different parts of the country and having fought two totally different mito battles on earth, got to run, got to eat whatever they wanted, got to breathe without tubes, feel the wind on their face, and RUN in ways they never could …

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July 25

Last year, on this very day, Kendall came to the hospital to have her bladder surgery. She apparently has a thing for the PICU in July, who knew?We are hangin out here, waiting. Waiting for the bugs to grow, waiting for her smile to show. Waiting for  the lab to call waiting for the shoe …

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The Ride.

And so this is what it is like to be Kendall’s mommy. You are shaken awake at 5 am by your husband. He tells you that Kendall says she is cold but feels burning up and her heart rate is in the 160s. You know instantly that this is not good. You leap out of …

The Ride. Read More »