“Scars and struggles on the way, but with joy our hearts can say…”

Kerissa • May 9, 2013

Lots of updates right here!

I saw my neurologist today, and she is referring me to Seattle Children’s mitochondrial medicine and metabolism program.  Here’s a funny fact: the only mitochondrial programs in the Northwest are in Washington and California but not Oregon…!  Not sure when that evaluation/consultation will be yet, but she is faxing the referral today and labeling it as “urgent”!

I’m also going to be undergoing autonomic nervous system testing at OHSU.  In addition, she mentioned me having a sleep study done because I’m so fatigued and also dealing with increased muscle jerking.  But she decided not to do this right now since I have a lot on my plate.

My mtDNA deletion/duplication analysis came back normal (but only 5-20% of mito patients have a del/dup anyways), so now the doctors are going to be doing something called whole mtDNA genome sequencing.  The results can be normal also.  If so, the next step is a muscle biopsy.  As you can tell, diagnosing a mitochondrial disorder is really challenging and takes many steps.

Right now, I’m currently stopping physical therapy.  My PT suggested I see this occupational therapist at OHSU who specializes in neurology and fatigue.  So my neurologist referred me to see her.  I’m sure I’ll learn a lot through her!

On Monday, I have to get a kidney/bladder ultrasound!  I sure feel like a human “guinea pig”!

Anddddd…that’s all for now!

“…Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone…
 Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful!”
~”Never Once” by Matt Redman

October prayer request

By Kerissa Lee • October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

Praises & Prayer Requests

By Kerissa Lee • September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23