Robbinsville Seventh-day Adventist Church
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Youth Ministries
The youth division is led by Bill Beans, Beth Kanellis and Charles Reed.

"Scraped Knees and a Strange Disease"
By Amanda Bange
Published in the Junior Guide
     “It’s not fair!” I cried. “Even the kindergarteners run faster than I do!” My mom tried to comfort me the best she could, but even she didn’t know what was going on. Every night I would come home crying- sad and discouraged because I was not like the other kids at school. They could run and play, but I was too slow, and I stumbled easily. Every summer my knees would be full of scars from repeated falls. Even as a baby I had trouble with balance. The doctors all said, “Oh, it’s just a stage- she’ll grow out of it.”

     But I didn’t grow out of it. Eventually I started kindergarten. The year went well. I made friends, and except for not being as fast as the other kids, I was a pretty normal child.

     One day I got up from my desk to go to the drinking fountain. On my way to the fountain I tripped. Ka-boom! I felt a sharp pain go up my leg, and I started to cry. Mom and Dad arrived and took me to the emergency room, where my leg was X-rayed. I had broken it- just from falling on the floor!

     Then we made another discovery. Anytime my family went hiking, I would get blisters on my toes. Normal enough- except I didn’t even realize that the blisters existed because I couldn’t feel them. In fact, I couldn’t feel my toes at all. My mom or dad could poke and touch my toes, but I felt nothing.

    What was going on?

     Finally, in fourth grade, my family doctor sent me to a neurologist, who prescribed physical therapy. I went to therapy, and it helped for a while. I was still a slow runner, but I didn’t fall as much.

     Fifth grade, sixth grade, seventh grade went by. (In seventh grade I was given the opportunity to preach my first sermon!) In eighth grade I moved to New Jersey, and the problems started again. This time the joints in my hips would crack and make popping sounds when I walked, and it really hurt.

     In my ninth grade year my knees started to feel as if they were going buckle under me every time I took a step. This time the doctor caught on to something. He sent me to an orthopedist and a neurologist. The orthopedist could find nothing wrong with my legs except of a lack of muscle mass. The neurologist, on the other hand, did find something. He tested my reflexes. Nothing. Could I feel my feet? Nope. Uh-oh. I was starting to lose sensation in my hands, too.

     “Well,” said the neurologist, “I have a pretty good idea what this is. Looks like CMT. We’ll have to do blood tests to confirm it.”

     What in the world is CMT? I wondered. When I got home, I looked it up. Turns out that CMT stands for Charcot-Marie-Tooth disease, named after the scientists who discovered it. It is a genetic disorder that affects your peripheral nervous system- the nerves outside your brain and spine. It is incurable, and there is no way to stop it from progressing.

     If this is what I truly have, I’m stuck with it for life! I realized with dismay.
     Sure enough, when the test results came back, they confirmed my worst fears. I had CMT1A, the most common form of the disease.

     Wow. For a fourteen-years-old, that was a lot to process. As the reality of my situation started to sink in, I became more and more depressed. Why would God let this happen to me?

     Around that time, my mom told some of the church members what was going on, and they started to pray. My depression lifted, and I began to see improvements. I got complete sensation back in my hands. I’m starting to feel my toes. I still walk a little awkwardly, but I am definitely seeing improvements. I believe it was 
prayer that made the difference.

     But dealing with my illness hasn’t been easy. First Thessalonians 5:17, 18 says: “Pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” I am still working on the “give thanks in all circumstances” part. Sometimes I forget and get frustrated when I'm the last one to finish laps or when I get tired before the other kids do, but through the grace of God I'm managing.

     Over my spring break I had the opportunity to tell my story in Santiago, Dominican Republic. I was a little worried, not only because I was speaking in Spanish for the first time, but because I wasn’t sure how the people would respond. God blessed, and the whole church came forward during the altar call!

     You see, God can use anyone. You may not be the fastest or the smartest, but God can still use you. You may be struggling with a scary or dangerous situation, but remember that God is always available, 24/7. I hope that if anything unexpected does come your way, you’ll remember my story and the way my God has been using me.