A story about a special little boy who has touched many with his courage in the face of a terminal illness that is beyond his control.
Johnny is only ten, ten and a half, just a child, but he has already had a rich and fulfilling life.
He has met many celebrities, including Johnathan Lipnicki, Hallie Kate Eiesneberg, Ed McMahon, Jerry Lewis, and Loretta Lynn, among many others, and he has appeared on television more than once and has made people aware of muscular dystrophy and other neuromuscular diseases--for HE is one who happens to be suffering from muscular dystrophy. He knows the fear and uncertainty that people feel when their bodies no longer work as well as they once did, thanks to ever-increasing weakness of muscles.
Unfortunately, Johnny's disease is terminal, and he is starting to show signs that he IS dying. He is now often on oxygen because his breathing is starting to become affected, and he tires a lot more quickly now than he used to. He is also spending more time in his wheelchair, and walking on his crutches is enough to bring on exhaustion, even after a short trip.
People now see this young child with the flyaway, spiky white-blonde hair and huge blue eyes, and they are at once saddened and moved. They feel sorry for him, but then they see that Johnny doesn't let his disease control him or his life; and they are at once amazed at his unfaltering courage and determination to make the best out of a bad situation.
Johnny also tells other people about Jesus, and he is giving them a sense of hope. He is a source of inspiration, especially to other people who are either sick or dying, and he gives them a sense of dignity and purpose, making them forget about their own troubles, even if it IS for a little while.
Johnny has also held the title of Poster Child for the Nashville Chapter of the Muscular Dystrophy Association for two years. (Another child, a little five-year-old boy named Tadd Kinset, has since replaced him.) He has appeared in local commercial ads for the MDA, and he has even been on the national Labor Day Muscular Dystrophy telethon. He has been able to go to places like DisneyWorld, thanks to the Make-a-Wish Foundation for terminally ill children, and he has seen some of his biggest dreams realized.
Johnny isn't expected to live long enough to become a teenager, but right now, that is the furthest thing from his young mind. He is too busy living life as a little boy, and he lives for each and every moment. He is a very happy little child, and nothing pleases him more than to spend time with his family or his friends--or with his beloved video games or Poke'man cards. He is a whiz at computer or video games, and many older kids have lost to him when they play against him. They also admire his extensive Poke'man card collection, and he and his friends will often spend many a happy hour swapping cards that are duplicates.
Instead of worrying about what the future may bring, Johnny would much rather do typical little boy things, and he would much rather spend time being happy. He doesn't like to think about the fact that he is dying, and he doesn't want to focus on being sad or unhappy. He has too much to live for, he says, and he is too busy enjoying his life the way it is now.
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Reviewed by Susan Barton
8/10/2003
Another story, I can learn from! Thank you for sharing
Johnny is only ten, ten and a half, just a child, but he has already had a rich and fulfilling life.
