Carter Family and Congenital Myasthenic Syndrome: September 2016

Update: Freshman Year September 2016 / 14 yrs. old

Hi friends and family! Just a quick update on Kyla Ann and her journey with CMS. She is a freshman now and I am super proud of the young lady she is becoming. She loves to read, participate in theatre, choir and her youth group. Her transition to high school has been positive and her teachers are awesome! She is able to talk about CMS and MDA and give her own outlook on the disease and how it effects her body. She is still taking Mestinon 4 times daily and fatigues by mid day. She has overall muscle weakness that appears in her eye muscles frequently. She also has trouble with her right foot/leg being more weak that the other leg. She sometimes seems to drag that foot. Here is what she wrote last year in preparation for MDA muscle walk about her journey:

I'm not ordinary. I like clothes, books, TV, Dr. Pepper, hanging out with my family, and sleeping. I go to junior high and I make A's. I'm in mostly AP classes and varsity choir. I have brown hair, brown eyes, and lots of freckles. But I'm anything but ordinary.

I have Congenital Myasthenic Syndrome. You're probably thinking, "Well okay, sure, but what is that?" CMS is a form of Muscular Dystrophy. What that means is my muscles don't work properly. I sometimes get really tired and I have to take medicine every day. CMS is not a contagious disease, and there is no cure. Not yet, anyway.

Just because I have a muscular disease doesn't mean I'm dumb. The brain is an organ, not a muscle. Everything else in me works fine but my muscles are messed up. Weird, huh? But this is the way I work: The brain sends messages to the nerves and the nerves pass it to the muscles who perform the duty. In my case my muscles are slow performers. I function fine as long as I take my medicine four times daily. If I don’t, I become tired and sick. When I was really little it seemed like I practically lived at the hospital because nobody knew what was going on with me. I got medicine, eventually, and taking it has become a part of my life. Remembering when to take it however… is a different story.

It doesn’t really bother me. It never has. CMS is just part of who I am. It even has some perks. Take my doctors for example. I go to Ft. Worth for a checkup twice a year at Cook Children’s. My doctors are super funny and I think they genuinely care about each child. But the best part is... Camp John Marc. Camp John Marc is a place where kids with all kinds of complications (from cancer to muscular disease) can meet and hang out for a week. Kids in wheelchairs can zipline, ride horses, go swimming, and do everything kids without chairs can do. I attend the Muscular Dystrophy Association’s Camp for kids with Muscular Dystrophy each year at the Camp John Marc facility. Each year I make a new friend and walk away with half a dozen hilarious stories that will make you fall on the floor laughing. My favorite part about camp is meeting people who have a lot of the experiences I had growing up. I love hanging out with them.

In short, I don’t use a wheelchair. I do my homework. I eat pizza. I read books. I sing. I laugh. I smile.
But I’m not normal or ordinary. What is normal?

Kyla Ann Carter
age 13
September 10, 2015

We are selling t-shirts this year to raise money for MDA Muscle Walk. Here is the info: