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Mattie Stepanek: Remembering A Young Hero (By Johnny, aged 11 1/2) by Karen Lynn Vidra, The Texas Tornado
Sunday, September 5, 2004
Rated "G" by the Author.
Johnny shares his thoughts about the upcoming Labor Day telethon for muscular dystrophy (in which he has), and also about the young boy, Mattie J.T. Stepanek who died just this past June from complications from a rare form of muscular dystrophy. Mattie was just 13 years old, not much older than Johnny is now.
I always feel sad this time of year. But I feel more so this year because of the telethon to raise awareness of people who have neuromuscular diseases (of which I am one; I have Duchenne's muscular dystrophy, which is the worst kind to have).
My name is Johnny, and I am 11 1/2. That is something because I wasn't expected to live beyond the age of five after I had been diagnosed with muscular dystrophy (I was diagnosed with MD when I was learning to walk; I kept falling down a lot, and I was quite clumbsy); and here I am, still living at the age of 11 1/2. I am quite affected by my disease now: that is, I can only walk for very short trips (on crutches), and I mainly spend my time in my wheelchair, which is electric. I am too weak to be able to operate a manual wheelchair, so my chair is now electric, and it really has made quite a bit of difference in my life! I also get tired quite easily, and it doesn't take much before I am worn out. I also am starting to have problems with my breathing and my heart, and I am often on oxygen, and I also need a lot of help in getting dressed, getting from place to place (from my bed to my chair, or to the bathtub from my chair or vice versa, etc.), having my hair or teeth brushed, eating, and being turned every so often so I don't get sores because I can't turn over by myself anymore. Having a disease like muscular dystrophy is quite a challenge, and it makes me mad because I remember how I was a few years ago, before my disease started to get worse, and I see myself now, and I don't like what has happened to me. I am becoming more dependent on people, and I find it embarrassing, especially when they have to help me with my toilet or changing my catheter bag or doing my teeth or feeding me.
I got this disease because my real mom had the muscular dystrophy gene in her body, and she passed it on to me. Her firstborn son (my older brother, Erick; he is almost 17 now) didn't get it, but I did, and now I have had to learn to live with the repercussions of having muscular dystrophy. Doctors thought I would be dead by the age of five, but I fooled them, and I am still going (pretty) strong now at the age of 11 1/2. I am not expected to live for more than a few years at the most, but I am bound and determined to try to stay alive as long as possible, and besides, I am not done living my life yet: I have way too much to do before I up and croak!
I don't like to think of my dying, but it is a part of what has happened to me, and the worst thing that can happen to me when I DO die is wake up in Heaven and see Jesus' Face. That I am looking forward to, but as I said before, I am not ready to die, and I want to put it off as long as I possibly can!
Anyway, back to what I was saying before I started yammering at the mouth (I have a tendency to do that!): I first heard of Mattie Stepanek a few years ago when the library at my school got some of his poetry books, and I happened to see them; and when I read his works, I was quite impressed, especially when I found out that he had a rare form of muscular dystrophy that left him breathing with a respirator tube and using an electric wheelchair in order to get around. Despite his disease, he lived a very happy and rewarding life, and he was born with a gifted mind; it was apparent that early on he was a lot smarter than most kids: he wrote his first poem at the age of three, and he published his first book at the age of 11. It became an instant best seller, and during the next several years, he wrote several more books of his poetry, and even though he was a young kid, he had the soul of a poet, and he wrote with much feeling and knowledge about various topics. He was quite an amazing person, and whenever people met him, they were moved by his courage and his outgoing personality. He didn't let his muscular dystrophy get to him: he met many people, both the famous and the common man, and he was bound and determined to live out his life as best as he possibly could. He wanted to live long enough to see a cure for muscular dystrophy, but alas: in June of this year, he finally died because his body was just too weak to fight any longer, and it was reported that he died peacefully, with his mother at his side. When the news hit that he had died, many people (including myself) cried, and at once, donations started pouring in; and they still continue to this day.
For the past few years, Mattie Stepanek served as the Youth Ambassador for the Muscular Dystrophy Association, and every Labor Day, you could be counted on to see him on the national telethon hosted by Ed McMahon and Jerry Lewis; and it was obvious just how much he was loved and appreciated. Now he will not be on any more, and it just won't be the same this year. I know that many people will be in tears as they pay a special tribute to Mattie Stepanek, and this year's telethon will have a much sadder feel to it. I know that I will be crying as I watch the telethon, and I know that my family will, too. We never met Mattie in person, but he seemed like a very happy kid, and we enjoyed his poetry and have his books. In fact, he was at work on his latest book, along with his good friend, the former President Jimmy Carter, when he died; so his book wasn't finished. Maybe someone will pick up on it and finish it for him; I hope so because it seems like it would be a good book. It was a book about peacekeepers, and he and Jimmy Carter were the co-authors of the book.
Now Mattie is in Heaven, probably running around and making good use of his body, something he wasn't able to do on Earth, and he is probably enjoying spending time with his brothers and sisters who went before him; and he is probably enjoying talking with Jesus and making new friends up there. He may be in Heaven now, but he will never be forgotten, and he made a huge impact on people and raised awareness of muscular dystrophy and all neuromuscular diseases in a positive and unforgettable way.
God bless you, Mattie! You will never be forgotten! Thank you for your gifted mind and your poetry; I shall always be grateful to you, and I wish I could have met you in person!
~Written by Johnny Sandusky, aged 11 1/2. :( >tears<
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Reviewed by P. Michaels
9/8/2004
Karen, it would be nice to be able to read some of Mattie's poetry. It's great that you are keeping the memory of him alive. Good write.
a most profoundly moving story...please, let's erradicate this menace from children's lives...and give them hope. Watch the MDA telethon on t.v. this holiday and DONATE...maybe we can make a difference
well done, karen--you are a champion for the disabled :) BRAVA!
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
I always feel sad this time of year. But I feel more so this year because of the telethon to raise awareness of people who have neuromuscular diseases (of which I am one; I have Duchenne's muscular dystrophy, which is the worst kind to have).
