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Johnny's Jottings: The Muscular Dystrophy Telethon 2007 For Michelle by Karen Lynn Vidra, The Texas Tornado
Monday, September 3, 2007
Rated "G" by the Author.
Johnny writes about going to the local MDA telethon, just as he has every year since he was seven. (Johnny knows all too well of the ramifications of neuromuscular disease: he has Duchenne's muscular dystrophy.)
Just got home; we were gone part of yesterday (yesterday evening, after church) and all day today. Spent our time at the local tv station that was carrying the annual Muscular Dystrophy Telethon; was there to raise awareness of the more than 40 neuromuscular diseases and help answer the phones when people called in their pledges.
I am tired, bone-tired. I also feel weaker than normal; that is what happens if I do too much. Now I am going to have to go to bed, to try to refuel, also have to take pain medication; my muscles hurt when I am up too long.
I did see some of the other local people who are goodwill embassadors of the MDA; also met some of the local newscasters and celebrities; it was a lot of fun, but by five o'clock, near the end of the thing, I was yawning my head off! LOL
It was another record year for donations to the MDA: over 60 million dollars was raised for the fight against neuromuscular diseases. It just goes to show people how important this fight against any neuromuscular diseases is because too many people are dying. I know I have lost too many friends to MD or other diseases like spinal muscular atrophy, which is another form of neuromuscular disease. It is very depressing to see friends who were once healthy getting worse; and there's nothing that can be done to stop the progression.
I know one thing: if it were not for the caring spirit of people, or their generous donations, I would not be here. I have benefitted greatly from the local MDA, and they have helped me through some horrific times in my life. I have overcome many odds, and have surpassed the prediction placed on me by doctors who don't know much about MD or how long a person will live with it.
Some people with MD (Duchenne's) die within five years after diagnosis while others (like me) continue to battle the odds or live longer than expected. I am so glad I have been allowed to live as long as I have: I have done some mighty incredible things that will last me for the rest of my life, have met many famous people. That is probably the best part of being a (-n ex) poster child for the MDA; the fame still goes on, and it's sometimes hard for me not to get a big head about it! LOL
I don't know how long I have left in my life, but I intend on making it as unforgettable as possible. I intend to live life to the fullest, do as much as I can in the short time I may have left. So far I haven't been disappointed. :)
Now, my muscles may be getting weaker, but my spirit is only getting stronger; it makes me more determined to beat this disease. I just hope that a cure will be found in my lifetime while I am still alive enough to know it. That would be a dream come true , not only for me, but for all people who live with neuromuscular diseases!
Well, I am starting to feel the effects of the pain meds, so I am going to shut this down, go to sleep, try to get some needed rest. I'm exhausted!! Take care, and bye for now!
~Love, your pal, Johnny Sandusky.
Also gotta' go to bed early because school starts back up tomorrow. I start ninth grade at the high school. I am very nervous; I am gonna' have to do a lot of heavy-duty praying, to make sure I make it through this year!!
Out there are people that do care, that don't read the misfortune of others as a everydays news.
You are one of those people among an increasing horde of materialistic, use and throw society.
Bravo! keep it going, for their sake.
Georg
Another good write, Karen. Johnny shows us the human side of what it's like to have Muscular Dystrophy. He also shows us, indirectly, there are far more heroes among us than we could ever imagine--those who use their wavering strength to be the best they can be despite handicaps.
Timely write - the Labor Day Telethons going on globally - Johnny is the perfect poster child for Muscular Dystrophy...I mean that in a very positive light and a teaching mode where Johnny keeps us informed of side effects, meds, daily activities and their tiring effects...he just gives us the whole nine yards on what we can expect with his disability...thanks for the story today, Karen Lynn...be well, you and Karla...Blessed Be.
Love,
Sage
Reviewed by Frances Webb
9/3/2007
This story was very well done and touched my heart. Children suffer the most from something like this but I have found most are very couragous and non-complaining, even more so than adults.
With Johnny having one of the forty neuromuscular diseases (Duchennes), it is admirable for him to devote his time raising awareness and money for research. These conditions must be erradicated, especially from children. Too many die too young. An excellent, compassionate journaling Johnny shares today; well done.
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
