When most people hear the word Muscular Dystrophy, they might think of comedian Jerry Lewis and his Labor Day telethon, or an image might form of an emerald collection of shamrocks during the March donation drive. For me, MD has been a part of my life even before birth. You see both my mom and her sister were diagnosed with MD in their mid twenties. They weren’t your typical “Jerry’s kids” since they’d been cheerleaders in high school and were pursuing professional lives as a teacher and a nurse. However, the disease had been there all along, slowly gaining momentum and causing muscles to degenerate. I, myself, had a 50/50 chance of either having the disease or being a carrier. Fortunately, I tested negative for both, however, my aunt’s daughter wasn’t so fortunate, and at thirty-four, she is unable to work and has very limited mobility.
So what is Muscular Dystrophy?
It’s a group of genetic diseases that cause weakness and degeneration of both the skeletal and muscular system, including organs such as the heart. Some forms of MD are Myotonic, Duchenne, Becker, and limb girdle. It is caused by flaws in the muscle protein gene, and it is usually inherited–www.mda.org
And this deals with YA literature how?
One night many years ago, my grandmother, while watching one of her favorite shows, Larry King, saw poet Mattie Stepanek speak. She was immediately touched and called my mom and I to watch. What I saw in this brave young man was amazing. Here was a little boy who the outside world might pity because he was shackled to a wheelchair and relied on a trach to be able to breathe. But Mattie didn’t want people to see him that way–he wanted people to grasp his message and to view him as a peacemaker and someone who “always played after every storm”.
If you’ve never had the opportunity to read some of Mattie’s poetry, you are missing out on something truly divine. They are messages of peace, love, and hope, and a guiding light in which we should all direct our lives.
So who was Mattie?
He was born Matthew Joseph Thaddeus Stepanek on July 19th, 1990 in Washington, DC. By the time he was three, Mattie was writing poetry to cope with the death of his older brother from MD. Mattie would also lose another brother and his sister all to the disease, and his mom, Jenny, also suffers as well. What came of his grief and personal mantra were heartsongs– a person’s special gift to be shared with others… or a person’s ‘reason for being.
In his short thirteen years, Mattie wrote seven books and contributed to two audio cd’s. His Heartsong books became NY times best sellers. He counted Larry King, Oprah Winfrey, and President Jimmy Carter as friends, and his message of peace and hope reached across the globe. Sadly, he passed away in 2004 just three weeks from his fourteenth birthday.
Throughout the month of March, I will be posting about Heartsongs to celebrate Mattie’s life and legacy as well as bringing awareness to other children and adults struggling with this disease. We’ll also be doing a giveaway of 3 of Mattie’s books.
“The best time to make a wish is when you throw a penny in the fountain.
The best time to make a wish is when you see the first star.
The best time to make a wish is when you blow out the candles on your cake.
And the very best time to make a wish is when you have a special prayer in your heart.”–Mattie Stepanek
Original post published on Old People Writing for Teens by GotYA contributor Krista Ashe. To view original post and reader comments, please click here.