I keep up with the latest clinical trials through the updates given by the United Mitochondrial Disease Foundation, but as of yet, there is sadly no cure and only symptomatic treatment. :(  I am on numerous oral medications and push liquid meds through my jejunostomy feeding tube.  I have a permanent central line in my chest to receive daily vital IV infusions/medications.  I also use an adaptive-servo ventilator at night for my central & obstructive sleep apnea.

Because I have fatigue, chronic pain, and other health problems related to my condition, I struggled with the fact that I couldn’t do much.  I truly felt useless that I couldn’t work and have a job, I couldn’t play my violin on the worship team at church anymore, I couldn’t help in the nursery, etc.  So I asked myself, “What CAN I do instead?”  The answer came quickly!  I could pray!  I was following a lot of blogs of babies and little kids with cancer, congenital heart disease, or other rare conditions like mito because it kept giving me a perspective that there are people everywhere we look who are going through suffering, so I began praying for them and the people at my church. :)  In addition, I came across an artist who was teaching hand lettering online for free!  I started learning how to the letter more than five years ago, and God has given physical strength to my hands to letter Bible verses or other uplifting quotes.  It feels like the Lord specifically placed this in my lap as a ministry to share my art with other believers going through hard times or even with strangers online. :)

In one word, Jesus.  People sometimes come up to me and say they don’t know how I do it.  And to tell you the truth, I don’t do it.  Jesus does.  Every day, I physically feel my broken body, and I am helpless without him.  When I am weak, he is strong.  I know God chose this path for me before I was born.  And whenever it gets overwhelming or discouraging, I trade in my pain for purpose, cast my cares at his feet, and think of something in the past that was hard to go through because it’s a reminder that God carried me through that specific trial.