July Update

Hi, friends,

I read this recent quote by Joni Eareckson Tada, and I wanted to share it with you. I hope it’s an encouragement. ❤️

“Our needs can never, ever outpace the resources of Christ. The same Jesus who promises to be our strength is the same one who upholds all things, even the universe—he upholds it all by the power of his word.”

I so resonate with all that she writes because she is such an example of someone who continues to trust Jesus through the hardest of times (quadriplegia, cancer twice, severe chronic pain, countless bouts of pneumonia, and more).

For me, it’s challenging not to be overwhelmed by the future and what may happen down the road. There’s currently no cure for Mitochondrial DNA Depletion Syndrome, and the pain in my legs has been so rough lately. 😢 We’re not sure why, but they especially hurt in the mornings. I did have my lumbar sympathetic nerve block in the middle of June, but it sadly didn’t give significant or lasting pain relief which was a disappointment.

Maybe through the years, Joni had the same thoughts like me about the unknown road ahead, and yet, she continues to be a real-life testimony of faith in Christ in the midst of difficult circumstances. She has now suffered with quadriplegia and all that comes with it for more than 55+ years, and each day, God has sustained her.

This month marks 14 years (😧!!) since my health trials really started, and I know the Lord will continue to supply me with all that I need for the long journey (whether physically or emotionally or spiritually). It’s good to remember that nothing is too much or too hard for him. Jeremiah 32:17 says, “Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Just 10 verses later, God reminded Jeremiah, “Behold, I am the Lord, the God of all flesh. Is anything too hard for me?” ❤️

In May, I saw a metabolic geneticist at OHSU, and we started the process for me to get whole genome sequencing done. You may be wondering why I still need genetic testing after more than a decade.. I have a proven mitochondrial DNA depletion shown on 2 separate muscle biopsies, but we still can’t find the molecular cause. It’s disheartening that my case is so rare. 🥺

My last extensive genetic test (whole exome) was back in 2015, so to have my entire genome studied is very exciting. At the same time, even though this test is so broad (and costly), the diagnostic rate is still less than 25%. But we think it’s worth getting done because having a molecular diagnosis could make me an eligible candidate for a clinical trial. Without a confirmed DNA mutation, I can’t enroll in one. 🙁 I am part of an online mitochondrial FB forum, and there are some patients on the trial who have shared that it helps them immensely! Could you please pray that, if God wills, my whole genome test can supply some much needed answers?

In my last post, I wrote about an appointment I had scheduled with a new neurologist in June. But then, I shared that doctor was going to be out of the clinic, so I had to wait and see his colleague at the end of July. Well, I received a call from his office today, saying that they were going to cancel my appointment because “they don’t specialize in mito.” 🥺 Even though I read on their OHSU page that “mitochondrial myopathy” is one of the conditions they treat... I’ve been waiting 4 months to see a new neurologist locally so that I don’t have to keep going up to Seattle. So it was incredibly discouraging and frustrating that I keep getting passed around by doctors because I’m “too complex.” What I would give to have a condition that was easily treated or studied. 😭

In the midst of these ongoing challenges, I pray that I will surrender all and take up my cross daily, knowing that God’s grace is sufficient in all things. I know he will use these continued trials to mold and shape me! Thank you so much for your continued prayers. ❤️