This story fist appeared in the Information Point newsletter in 2009, when Allie Welter from Minnesota, USA was 13 years 0ld. Allie had recently been required to write an essay on something or someone close to her heart – she chose to write about her brother Andy, who is diagnosed with myotubular myopathy. Allie got an A+ for her work which can be found below.
My 8 year old brother Andy isn’t like all of your irritating little siblings. He doesn’t “pull my hair” or steal my belongings and he’s the exact opposite of annoying. I find / make the time to appreciate what a wonderful, sweet boy he is. Cars, trucks, video games, and lots of other boy things are his favorite kind of stuff. He’s into going up and saying, “Hello”, to every stranger who passes him by. It’s hilarious to watch him and some old lady he just met strike up a conversation. Sometimes the good things cover up the bad in a heavy blanket, so well that I barely remember about his disability.
His shiny blue wheelchair is like the muscle in his legs as it takes him at 5 miles per hour around his school. Because of his condition, he learns slightly slower than some other kids his age.
He also has to have a ventilator to help him breathe. His rare medical disorder is called MTM and it gave him limited muscle in his arms and legs. Brain deterioration was also a problem when he was younger; so bad we thought he wasn’t going to live.
These flaws don’t affect his spirit at ALL though! Andy’s got a sense of humor, so huge on the funny scale that he can turn frowns upside down. He can bring the sun out from behind dark gray, icky clouds on a rainy day. He can brighten even the grimmest person’s mood. He can … well I could go on forever with this list, but I think you may be starting to get my point. INSPIRING is most likely the #1 word on my list of words that describe him. Even after all the surgeries, he managed to keep that grin glued on his face. I’d never really wondered what it would be like to meet other kids with MTM; kids like Andy. I guess I’d just kept on telling myself he was one of a kind. There was no one out there who experienced the same hardships that he did. That was simply my opinion until my mom spoke to me of the MTM / CNM (a condition much like MTM: it’s not as severe though and girls can have it too) Family Conference.
Facebook had brought families much like mine together. So many other kids face dreaded MTM and CNM and I had had no idea! My mom had met 50 or so families from Facebook! So many were found that several people were able to schedule a conference in Houston, Texas where we would be able to meet each other! The 1st EVER MTM / CNM Family Conference. Just saying those words makes me smile. I just can’t help it!
There was only one problem though. Since Andy gets sick too easily, he couldn’t come since the H1N1 virus was buzzing around, we can’t take any major risks. He probably would’ve loved it though! The wheelchair races through the lobby. I could just see the grin on his face when he crossed the invisible finish line. He would’ve loved it … Well since he couldn’t come, I had to enjoy it for the both of us. That was the easiest thing of all. Meeting everyone there was like déjà-vu the whole time: like I was meeting some old friends / family that I hadn’t seen in ages. Amazing was the word to describe meeting all of these kids with MTM. Seeing how much they were like Andy only made me miss him more. They were all so similar; yet so different at the same time.
When you live with someone who has a disability, it’s like their problems become yours and you learn to understand the lessons that most teachers don’t teach you. You learn to become a better person and not to be so judgmental on the outside, but more on the inside. Being selfish is a hurdle that you can now easily jump over when you figure out how simple your life is compared to many others in the world. So next time you come across someone you don’t know like my brother, or maybe someone without a disability, remember: “Don’t judge a book by its cover. Once you start reading, the text inside it might be the last thing you’d expect”.