30 Days of MD: My Typical Teen’s Journey With Duchenne

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by BNS Staff |

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Photo courtesy of Sarah Lacey

Day 20 of 30

This is Sarah Lacey’s story:

My son Sam is 17 years old and has Duchenne muscular dystrophy (DMD). He was diagnosed when he was 5 and needed to be in a wheelchair full time by age 10.

DMD is a progressive weakening of the heart and skeletal muscles, and is caused by a lack of dystrophin, a protein in the muscle. One in 3,500 boys is born with Duchenne, and the average life expectancy is estimated to be until the mid 20s.

Sam is a junior in high school and a video game junkie like most teenaged boys. He has a good sense of humor and is great with technology. Pizza is one of his favorite foods, and he thinks his mom is lame at times, so he’s pretty much a typical teen. He participates in choir, enjoys economics class, and hangs outside during lunch with his friends. He is a big movie buff, and going to the movies is an activity we enjoy doing together.

It is not always easy being different, especially as a teen. Sam handles it all pretty well, is a good self-advocate, and has a good team at home and at school supporting him. He has the same hopes, dreams, and fears that all teens do. He isn’t looking forward to taking the SAT but is preparing to go to college someday. He would like to do something involving the designing of video games.

A wheelchair doesn’t define Sam. There is so much more to him. Despite DMD feeling like a death sentence, there is so much Sam was able to experience: attending summer camp, swimming, playing video games with friends, singing in the choir, and going to the homecoming dance.

There’s definitely sadness and grief, but plenty of happy moments in our journey with muscular dystrophy. We’re always hoping and praying for a cure in Sam’s lifetime and trying to make the most of every day.

Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.