Why Johnny, aged 10, is so fortunate despite having to live with an incurable illness called muscular dystrophy.
Johnny is a very fortunate little boy, indeed. You may not think so, especially when you see that he is in a wheelchair, and can't walk as well as he used to, but things are a lot more different than they seem.
Johnny is only ten years old (he will turn eleven years old in late December, just after Christmas Day), but he has seen and been through so much in his young and short life, and this is why he seems so "worldly" for his tender years.
He was born premature in West Germany, weighing just 2 pounds, but he proved to be a little fighter, and he survived his early birth. He was orphaned at birth when his mother died while giving birth to him, and he then went to live with his grandparents. His grandparents then got sick and died, and Johnny was immediately put up for adoption, where he then went to the United States when he was just a few months of age.
Johnny went to a family in Tennessee, and he was immediately loved and cherished by his adoptive parents. He then acquired a sister of the same age, and the two became inseperable. He seemed to be developing normally despite his premature start in life, but then he started showing signs of developmental problems when he was learning to walk. His parents found him to be rather clumbsy in nature, but they dismissed it at first; they thought it was due to his prematurity. However, after a bad fall down the stairs, they decided to have him checked, to rule out any physical problems.
Unfortunately, it turned out that Johnny had a physical problem, a serious one. He was suspected of having a neurological disorder, and he was then seen by neurologists and other specialists. That was when it was discovered that he had the first signs of muscular dystrophy. In time, he would end up in a wheelchair, and he wasn't expected to live to the age of ten years.
Of course, his parents were crushed beyond belief at the devastating news. Their beautiful little boy had just been given a death sentence, and it didn't seem to make any sense whatsoever because Johnny was so healthy. He had nothing more than a cold in his early life; and now here he was, facing the first of many battles that were to come.
At the age of one-and-a-half, Johnny came down with a virulent case of meningitis that struck with such force that he was in a coma just hours after becoming sick; and for three months, he barely clung to life. When he finally emerged from his coma, it was discovered that he had brain and physical damage involving his sight and hearing.
After therapy had brought him back, Johnny battled with his new disabilities with the tenacity of a prize fighter, and he was bound and determined to overcome his problems. He proved to be an inspiration to many, and especially since he was now chosen to be a "poster child" for the Muscular Dystrophy Association. He was now four-and-a-half, and he carried this title for a little over two years.
During his tenure as Poster Child, Johnny met many celebrities, including Jerry Lewis, Ed McMahon, and Charo, and he was invited to appear at the national telethon for the organization, where he met even more celebrities. He was enjoying his time in the spotlight, and many people were soon enamored with this little bundle of courage with the white-blonde head of hair and the incredibly large blue eyes that sparkled with life and determination.
At the age of six, Johnny had a second round of meningitis, but thankfully, this second bout wasn't nearly as bad as the first; still, it gave his parents and family many anxious moments, and they were not to be comforted until he had recovered. He was now in first grade, and it was discovered that he had significant learning disabilities that hampered his ability to learn and read, and he was then placed in a special class for kids who had multiple disabilities.
When he was seven, Johnny suffered his first epileptic seizure, and he would only suffer from more seizures until he was tested and then diagnosed; and he then had to cope with having yet another problem on his growing list of health concerns. He then had his first "spell" of breathing difficulty, and it was discovered that he was starting to show more signs of his muscular dystrophy getting worse. His lungs were now starting to become affected by the disease, and by that fall, he was now to be on supplimental oxygen.
For a year, Johnny seemed to be doing better (he was having breathing treatments that helped his breathing, and he was still having ongoing physical and occupational therapy, and the medications he took for his epilepsy were now controlling his seizurs), but then at the age of nine, he started having problems with getting dressed and with doing tasks like brushing his hair or teeth. He now required the aid of a helping dog, who would serve as his arms and legs whenever he needed something picked up off the floor or just to offer him love and companionship when he needed it. "Ginger" and Johnny soon hit it off, and they soon became the best of friends.
Now ten, Johnny continues to struggle every day with his disabilities, but he remains upbeat and happy, and he loves life and enjoys it to the fullest. He knows he now has a reason for living, and ever since accepting Jesus Christ into his heart nearly two years ago, life for Johnny has been especially sweet. He now goes to church every week with his family, and he has witnessed to others about Jesus Christ. He also now plays summer baseball on a league for kids with disabilities, and he enjoys it very much. (This is his second season with the "Challengers".) In addition, Johnny continues to have a healthy relationship with his family, and he now has many new friends: he is no longer the butt of cruel jokes by other kids, and he is happier now than he has been in a very long time.
Johnny continues to defy the odds placed upon him by doctors when he was five. He has lived five years longer than doctors thought, and each day brings on a new set of challenges and adventure. He is now going to be entering the fifth grade in a few months, and unlike past years, he is looking forward to school, and he is looking forward to being with his best friend, Jose' Varquez.
Johnny has a lot of reasons to be sad, but he isn't. He is enjoying his life way too much now as it is, and every day brings on a sense of purpose and fulfillment; and his way of looking at things is this: "Every day I wake up breathing is a very good day for me." He is also optimistic that a cure will be found for his disease in just a few short years, and he is already looking forward to "leaping out of my chair and running around like a cheetah".
Not bad for a little boy who wasn't expected to live to the age of five years. He is indeed blessed by a Loving God who has seen to giving a speical little boy hope in the face of living with an incredibly serious illness.
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Reviewed by Bianca Boonstra
6/22/2003
I agree - terriffic write my friend
Reviewed by Dove
6/21/2003
{{{{Karen}}}}
oh my precious little light, you are such a beautiful compassionate voice for the ones that cannot speak..Such humbleness that you would serve with your gentle caring ways and your love...This is your reason you were born this way..I have had so much personal sorrow and abuse and that is why I am a light today..For my steps have given me GRACE....Father graces us with our challenges to help bring light..I am in tears as I write this..Both you and your sister restore my healing and brighten this earth mother..Keep teaching others how to walk in gentle fields of compassion, so we may know his grace, his light, his love, his kingdom..Place some of these on the poetry board..I think many NEED and MUST see this..
Another wonderful but heartbreaking write, keep up the great work!
God Bless
~Michelle~
Reviewed by Robert Blackwell
6/21/2003
Another awesome gem, my friend! {{{{{{{{{hugs}}}}}}}}}
Reviewed by Vesna Perkovic
6/21/2003
Thankyou Karen,for sharing this story..I feel enormous gratitude just by being alive and healthy..it's incredible how much a human being ,who is loved so much,can do..miracle upon miracle...I am blessed for I have six children,three of each gender...they truly are a gift to us..indeed.
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Johnny is a very fortunate little boy, indeed. You may not think so, especially when you see that he is in a wheelchair, and can't walk as well as he used to, but things are a lot more different than they seem.
