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Archive for the ‘Energy for Life’ Category

So I haven’t updated much because there’s really been very little change. I’m still stuck in a hospital room, unable to get the necessary nutrition through tube feeds, bored out of my mind. For the last week or so, I’ve heard that I’ll be going home “tomorrow.” I’m pretty sure that’s medical speak for “never,” but I’m still hopeful. The pancreatitis attack is over and my aspiration pneumonia has cleared. I feel fine and just want to go home. I suppose the positive is that we’re finally getting things in line so when I do go home, I won’t end up back here.

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Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

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While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”

I do, too.

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