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Johnny's Biggest Fight (As Told By An Older Sister)
By Karen Lynn Vidra, The Texas Tornado
Sunday, May 05, 2002
I am 13 years old, and I have a great many siblings. All of us kids are adopted, and most of us kids are physically disabled (although I'm NOT; I am perfectly healthy).
I am going to write about one of my little brothers, who so happens to be seriously ill. Johnny, as we call him, is nine years old, and he was diagnosed with Duchenne muscular dystrophy when he was learning how to walk. At first mommy and daddy thought it was due to his having meningitis as a baby or due to being born premature (he was clumbsier than normal, and he'd fall often), but then Dr. Emmons, our pediatrician, thought something else was in order because Johnny's muscles didn't seem as strong as other kids', plus, while having a routine blood test, it was found that he carried some abnormal gene. He then referred Johnny to a neuromuscular specialist, and after having a battery of tests it was found that Johnny had the beginning symptoms of muscular dystrophy. (It turned out that his birth mother was the carrier of the defective gene and had passed it on to her son. He was the one who developed Duchenne's muscular dystrophy.)
Of course, all of us were absolutely devastated at the news, for muscular dystrophy is ALWAYS fatal. In time his muscles would get weak, and he would lose all ability to walk, talk, move, or even BREATHE. Death would come in the form of heart or lung failure (even something as simple as a common cold could kill my little brother). In short, the news was AWFUL, the worst possible news one can about imagine.
As Johnny got older, he DID become weaker. He started having trouble walking at about age 3, and he was fitted with leg braces and got his first pair of crutches. By age 4 he acquired his first wheelchair. Each year that went by seemed to bring more in the way of change in Johnny's ability to do even the simplest tasks. By the age of 7 1/2 he was having trouble putting on his pants and socks, and someone had to help him get ready. At age 8 1/2 he was starting to have a little problem with his breathing and oxygen therapy had been prescribed by our doctor: Johnny's lungs were getting weak. He now had to sleep with oxygen while in bed.
Now, at the age of nine, Johnny continues to struggle. He has to have somebody help him get dressed or to the toilet, and mommy has to brush his hair and teeth because he can no longer do it himself. And his writing (which has always been poor) is getting harder to read. And--he still has to use the oxygen.
I get so sad when I look at my little brother. He is really a cute little kid, and he is so charming in his ways. But I think about his having MD, and then I get MAD, MAD, MAD because it seems that NOTHING is being done to find a cure!! Everyone is so hyped up about AIDS--WHAT ABOUT PEOPLE WITH NEUROMUSCULAR DISORDERS, people like MY LITTLE BROTHER???????? I DON'T WANT HIM TO DIE!!!!!!!!
I am glad Johnny has such an upbeat attitude about him, but I wonder if he is scared to die. I wonder if his impending death is something he thinks about. I wonder if he realizes just how sick he really is. These thoughts go through my mind time and time again, a million times a day.
By the way, doctors don't think that Johnny will live to become a teenager.
The ONLY good thing about all of this? Johnny accepted Jesus Christ a little over a year ago and is saved as a result. I know he'll be going to Heaven.
When he does I'll be looking for him when it's MY turn.
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