THIS IS MY STORY . . .

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Jul 25, 2018
Hey friends,   I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went!   Been trying to pull all my thoughts together on what we learned at the appointment.   After updating my mito dr. on all that’s happened since I last saw him, he is thinking more and more that the POLG gene variant that was found in my whole exome sequencing is the likely culprit that’s causing my mitochondrial DNA depletion.   According to the NIH genetic reference site, POLG “is a DNA polymerase, which is a type of [...]
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Aug 24, 2017
"If I should say, 'My foot has slipped,' Your loving kindness, O Lord, will hold me up.  When my anxious thoughts multiply within me, Your consolations delight my soul." ~Psalm 94:18-19   Hey friends,   I don't even know where to begin. :(  These last several weeks have been so hard to say the least.  I'll try to explain everything, but just a warning---this is a super long update!!   First off, please please keep my sister in your prayers!  Over the course of 2 1/2 months, my sister has lost 12 pounds, and she continues to lose one pound [...]
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Jun 1, 2017
Hello friends,   My family and I got back from CA on Sunday.  It was a super quick trip, but we were able to spend a lot of time together which was so special. :)   Our first two evenings there, I suddenly had terrible nausea and severe muscle weakness to the point that I couldn't lift my arms or even get up to brush my teeth.  All I could do was lay on the hotel bed.  It was even so hard to hold my phone up. :(  I couldn't help crying because it was scary.  This didn't happen at all when my parents and I traveled to San Diego in January.  I hate that I'm getting [...]
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May 18, 2017
Hello friends,   Last week, I had a follow-up with my neurologist.  I wasn't expecting it, but she had a serious talk with me and my mom...  She told me that my mitochondrial disease is progressing, and because there's no cure and no good treatments (except antioxidants, symptom management, etc.), she said there's not much we can do except "keep me comfortable."  I know I've been getting worse medically....I wasn't this bad 2 years ago. :(  But to hear my doctor tell me this was really hard, and I'm still processing all of what she said.  No 24 year old should have to hear [...]
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