A young boy faces battles in his every day life, and he faces them with courage and dignity.
The little boy in question suffers from the severe form of muscular dystrophy, Duchenne's, which strikes boys primarily. Not ALL forms of MD are as severe as Duchenne's; but MD IS serious enough, and everything must be done to find a cure and make the future better and brighter for those who DO suffer from MD or any other of the 40 neuromuscular diseases out there.
Johnny Sandusky is my name, and I am 11 years old now. I turned 11 on December 26, the day after Christmas.
I live in Tennessee, in Nashville, with my mommy, daddy, and my brothers and sisters. My granny and granpy Moliere' live with us, too; so we have a full house. And that is NOT counting our pets!
I have had to struggle with my life ever since I can remember. I have muscular dystrophy and other problems, and sometimes I am so weak I have to have a lot of help with doing things like getting out of my bed to my wheelchair (or vice-versa), brushing my hair or teeth, or getting dressed. Sometimes, I can do these things by myself, but lately, more often than not, I find myself having more trouble; and I usually end up needing more help than usual. I am in a wheelchair most of the time, but sometimes, on a good day, I can manage quite well on my braces and crutches; but then I get tired out, and so it's then back to the wheelchair for me.
I also have problems with my hearing and with my vision. I had meningitis when I was really little, almost a baby, and it left me with problems with my eyes and ears. It also left me with brain damage, and I also have seizures now because of it. Sometimes I'll have more seizures than usual, but I take medication to help try to control the seizures. Now, I don't like it when I have the seizures because afterwards, when I wake up, my head is all fuzzy, and my body hurts; it feels like it's been ran over by at least five HUMMERS! LOL I also have a bad headache, and I then have to go to the doctor's office, to make sure that all is okay with me (which it usually is), but sometimes, I'll have one seizure after another, and I can quickly get into serious trouble; and this is when I have to go to the hospital, where I am usually then admitted for tests and stuff. Or I will get a new medication to help me because my old medication doesn't work as well for me anymore.
It is a pain dealing with my muscular dystrophy because I never know what the new day will bring, or what problems I will have, or what else will go away; and I don't like that because it just only means that my disease is getting worse, and that really makes me mad. I don't like thinking about death or dying; I am only a boy, and I am only 11 years old! I should be thinking about what I want to be when I grow up or things about what life will be like when I am a teenager and looking forward to things like driving a car or getting a girlfriend or going on a date or to the prom, not about dying! (I am not expected to live beyond two more years at best, but I have heard THAT before. When I was first diagnosed with muscular dystrophy, I wasn't expected to live to the age of five, according to my mom; but I guess I fooled the doctors, because I am still here, six years later!)
But I need not worry so much about dying. (We ALL do that eventually...but I'll just do it a lot sooner than a lot of people, DARN it!) See, I am a Christian, and being a Christian means that when I DO die, I will get to go to Heaven, where I'll see God and Jesus and all the angels, and I will also be HEALED, and I'll then be able to run and jump and play, just like any other little boy, something I didn't get to do while on earth because of my muscular dystrophy. (Boy, am I EVER looking forward to THAT!! :) ) That's always exciting to think about! :D So maybe my dying is NOT a bad thing really; as my mommy always says to me: "The worst possible thing that can happen to me when I die is seeing Jesus face to Face!" Maybe that IS a good thing....LOL
Even with my having muscular dystrophy, I have been a very lucky kid in a lot of ways. I have been able to meet many different stars from Hollywood and in country music, and I also have been a Poster Child for the Muscular Dystrophy Association, which was a lot of fun. (A different child is now the Poster Child. He's a lot younger than me; he is only six.) I also got to pet real life cheetahs and lions and tigers at the zoo, and I also got to be on several different tv programs including the Jerry Lewis Muscular Dystrophy Telethon and on "Maury" (on "Maury" I got a brand new computer, which I did NOT expect!), and I also got to go to New York City and see the World Trade Towers (AND got to go up ALL the way to the TOP; boy, were those guys ever HIGH!!) before the terror attacks happened, and I also got to go to the Broadway shows (while at Broadway, I got to see "The Lion King", which is my very favorite movie and my very favorite musical; and I got to go backstage and meet the cast, and get their autographs, and get my picture made with them; boy, was THAT ever FUN!!), and I also got to meet the President. That was cool, too; and he was very nice!
But even with all the fun and exciting things I have done, I have still had to face many battles, and these battles I will continue to face until I die; but as I said, as long as I have my family and also JESUS on my side, why do I EVEN have to WORRY?? I have it a LOT better than do a LOT of people with my disease!
I compare my muscular dystrophy as a war. I have many battles to fight, and I have to make sure that I win whatever battle it may be. For example, I see weakness and tiredness as my enemy, and as a soldier in battle, I have to make sure that my enemy doesn't pull a sneak attack on me and/or catch me off guard. I have to be on duty, and I have to fight if the enemy does attack, and fight like I have never fought before, to make sure that I can overpower my enemy and end up winning the battle. That is how I see my muscular dystrophy. I am at war with an unseen enemy, and it is my job to make sure that I do all I possibly can to defeat the enemy and win one for the good guys. (The good guys, being, of course, my muscles, or my body, period.) I then can plot another strategy or plan of attack in case the enemy is thinking of pulling another attack and then go on from there. Sometimes I lose, but more often than not, I have won (but it seems lately the enemy is acting more vicious and more mean, and then I end up having to fight twice as hard to win!), and I think I have done pretty darn good, considering all the odds that have been stacked against me in the past (or even now!).
I see a man, of seventy years of age, Who has fought crippling MS for 30 years and is one of the happiest people you can meet. WE all, react differently to our disabilities of mind and body. Faith is what helped my friend through the years and the advent of new medicines. Great write
i enjoyed the entire story, it is very well written, but the following
"...i compare my muscular dystrophy as a war. i have many battles to fight, and i have to make sure that i win whatever battle it may be....i am at war with an unseen enemy, and it is my job to...win one for the good guys..."
are particularly powerful and moving. why do children have to suffer??? these sentances cry out for attention, and yet show the strength and courage children battling diseases have...very, very well done *BRAVA, dear (((twin sister)))*, you are really coming along in your story writing!
((((((HUGS)))))) and love,
karla.
if anything, try not to use "i" so much :) otherwise, outstanding!
The Harvest of Souls Crossover is a story that is exciting, vigorous, and full of suspense about the fight of good and evil in two realms, the light and dark world. The Howdy Family is determined to defeat the world of darkness, led by the seemingly
