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Frisco STYLE Magazine

Have a Little Faith

Jan 01, 2017 ● By Madison Trader

When we heard Madison Trader’s story of strength, faith and perseverance, we knew our community needed to hear her message. Trust in the Lord and faith in His plan can help make miracles happen, and Madison’s story is evidence of that.

A little more than two years ago, my life changed forever. I was no longer an average 12-year-old girl. It was around this time I discovered that what I thought happened to everyone, what I thought was normal, was actually a rare genetic disorder called “Hypokalemic Periodic Paralysis.”

This is a gene mutation, specifically, the gene that codes for ion channels. The mutation interferes with my ion channels’ ability to do their job properly. They allow potassium into the muscle cells. The potassium disrupts the balance of ions inside and outside of the muscle. This balance is what allows the signals from my brain to move my muscles. When the ion balance in my muscles is disrupted, my muscles cannot contract, which results in paralysis. When my muscles are paralyzed, I can feel everything a normal person can feel during an episode, but I cannot move. An estimated one in 100,000 people have this disorder. The exact number cannot be calculated due to the disorder often being misdiagnosed as something else.

For me, symptoms began when I was eight. Every couple of months, I would not be able to move, no matter how hard I tried. My episodes only lasted for a few minutes, so I thought it was normal. It was not until I was 12 that I had a spike in episodes — up to 12 in one day. I felt like I should tell my parents. Since everyone was asleep when it happened, I figured I would tell them the next morning. However, the disorder told them for me when, the next day, my dad and I were watching YouTube videos on the couch. He asked me to move my legs. Because I had already gone into an episode, I told him I could not. This was one of the few episodes that affected my arms and legs, so my dad simply picked my legs up and moved them, thinking I was messing with him. My legs were dead weight. There was nothing holding them up, though a few minutes later, I was OK again. I told my dad that this had been going on since I was 8, and shortly after, he called my doctor, who instructed him to take me to the ER. The ER doctor had never heard of the disorder and “Googled” it. This was when the doctor diagnosed me with Hypokalemic Periodic Paralysis.

The senior doctor at my family doctor’s office started overseeing my treatment, which began with potassium, in the form of orange juice. That was not working. In fact, one morning, I woke up in an episode and had to use incredible arm strength to maneuver myself around the house. After an hour and a half of being in the episode, I texted my mom at work to let her know. My mom took me to ER, and this time, the doctor knew what the disorder was and gave me Diamox. About half an hour later, I could wiggle my toes, then bend my knee, then walk … after an episode that had lasted six and a half hours. After that, my doctor put me on Diamox, which did not help long-term. This caused my episodes to increase and my face to be affected, as well as my arms, which were always affected. Shortly after, I was taken off Diamox, put back on potassium with a salt supplement, and was referred to Seattle Children’s hospital. So, a couple months later, I was on my way to Seattle, Wash.

During the evaluation at Seattle Children’s, they asked me to recite the last six months of symptoms. After that, they decided to admit me. Just about every neurologist and resident at the hospital came in to see me and ask questions because there was only half of a page about this disorder in their medical textbooks. No wonder not many doctors know of the disorder.

The doctors at the hospital wanted to do a test called “noxious stimuli” every time I was in an episode. They did not have to wait long. During my first night there I had an episode. The doctor took the hammer they use to test reflexes and pushed it over the nail of my big toe. This was extremely painful — one of the worst pains I have ever felt. The goal of this test is to cause enough pain for my nerves and movement to bypass my brain and go to my basic human instinct, the same instinct that causes you to pull your hand away from something hot. My upper body tensed as they did this, as I tried to move away. However, my legs would not react to the pain. This proved to the doctors that I was physically incapable of moving my legs. The bad thing was, they did this for every episode, each time increasing the pain threshold in hopes of achieving a different result. With the test results the same every time, my parents had enough and told them they could not do it anymore. Doctors told my family that I would need a wheelchair, shower chair and that the house would need to be adapted.

It did not end there. They ordered a genetic test to see what mutation the gene had taken. There are more than 30 (with more being discovered every year) mutations, with one in three people having an unknown mutation that has not been discovered yet. When the test came back, our family doctor realized they had only tested for three of the possible 30 mutations, due to limitations defined by our insurance. During the effort to figure out treatment, my family discovered that the only expert in the U.S. was in Dallas, Texas. The problem was, she only saw adults 18 and older, and I had just turned 13. Thankfully, she told my family doctor and Seattle doctors that she was willing to collaborate with the lead neurologist at another Dallas facility, so we moved to Texas.

At this point, my longest episode had lasted 48 hours, though once we moved, things got worse. My episodes starting lasting weeks. My muscles would hurt from lack of movement, and whenever I was able to walk, I was incredibly sore. I thought my only hope was the neurologist in Dallas.

When my appointment came with the neurologist at the Dallas facility, she did a five-minute exam and ordered an MRI and EMG. I went to the MRI, but I decided not to go to the EMG, as it was basically an electric noxious stimuli test. A few days later, the neurologist called my mom and said that she did not think I had Periodic Paralysis, and that she thought I was permanently paralyzed. However, I was standing next to my mom when she called. At this point, I lost hope. I thought, “Oh well. This is my life now … until I can see an expert.” My episodes were lasting months at a time, with only a few minutes of being able to wiggle my toes between episodes.

During this time, my dad joined the Rotary Club of Frisco, and one of his friends invited him to attend a meeting with a small group of men from Preston Trail Community Church. This small men’s group started praying for me. After a few weeks of him attending the small group, we were invited us to attend church. We reluctantly went. Not long after, I started going to my own youth ministry and small group, where the people also started praying for me. And miraculously, I soon began walking … and kept walking! My faith in the impact of prayer and in Jesus grew — I had hope again. It wasn’t about just going to church; it was about the people in my life who were praying for me and helping me focus on the right things.

My wheelchair prevented me from doing many things I had wanted to do. However, thanks to the grace of Jesus Christ and the power of prayer, I had been walking for three months when I was given an incredible opportunity. In October of 2016, I was able to go on a mission trip to an orphanage in Mexico, which was one of the most humbling experiences of my life. Not long after that, on the day before Halloween, I ran the Spartan Sprint, which is a 4.3-mile race that includes 22 obstacles and three water stations, all in the Texas sun and heat. The obstacles were hard and I was exhausted, but I was determined. I was determined to prove that I could finish despite my disorder, and finish I did, in two-and-a-half hours. I fought and proved that no matter what, you can make it through anything. All you need is a little faith in Jesus Christ, people who love and pray for you and a desire to not let anything stop you.