The chronicle of a special-needs child who continues to defy the odds and surpass all expectations pinned on him.
Johnny Irwin Allen Denver Sandusky is a child who knows what it means to live on the edge and how it is to overcome great odds in life.
Johnny is a child who has many special needs; yet, he continues to surpass any expectations or predictions pinned on him by his doctors. He is in a wheelchair because he has a progressive neuromuscular disease that is slowly, but surely, gradually robbing the strength in his muscles; and because of this, he is very weakened. He can't walk but for short distances, and when he DOES walk, it is on a pair of bright-green Lofstrand crutches. He also wears leg braces on his stick-thin little legs, and also fancy black orthopedic shoes. Every day he notices some changes in his ability to do things; and it has gotten to the point to where he needs help with getting dressed, getting his hair or his teeth brushed, or with getting items off shelves, as he now can no longer do these things without some form of help. He CAN, however, still manage to feed himself, write, type on the computer, draw, sing, and play the piano or keyboards.
Unfortunately, his disease is terminal. Doctors don't think he will live long enough to become a teenager, which is in just a few short years, for in December, Johnny will then turn 11 years old. He has, at best, just a few more years at life.
In addition to all the physical problems, Johnny also has started to have problems with his breathing. His lungs aren't as strong as they were a year ago; and for this reason, he gets short of breath easily, and he often has to be on supplimental oxygen. In time, Johnny will get so weak he will be unable to do anything for himself, and he will be bedridden; and something as simple as a cold or the flu could prove to be fatal to him.
Johnny also has other problems to contend with just besides his muscular dystrophy. He has vision and hearing problems due to a bout of meningitis he had when he was just two years old, and nearly five years ago, at the age of six, he had another bout of meningitis. He wears hearing aids in order to hear (without them, he is quite deaf, and it is very hard for him to hear), and he also wears glasses with extremely thick lenses in order to see better. He is legally blind, and he often has to have the words on the computer screen or read books with large print because he can't see small or normal sized print that well. He also has a noticeable stutter to his speech, and he is really embarrassed about his speech impediment.
If that weren't enough, Johnny also has epilepsy, and he is prone to seizures. He has been known to have at least three seizures a week, even with his medication, in which he takes every day. He is often teased by other kids about his handicaps or medical problems, and for a long time, he had no friends. He is still somewhat shy and quiet in nature, and it takes a while for him to warm up to strangers.
Johnny is an amazing little boy, in light of his handicaps. He is a whiz at video or electronic hand-held games, and he is talented at learning new songs on the piano or keyboards, which he has played since he was the age of five. He loves music, but he especially loves country music; and he isn't afraid to tell you that his two favorite singers in country music are Reba McEntire and Ronnie Milsap, both, of which, he has had the pleasure (and honor) of meeting. He is also very knowledgeable at sports statistics, and he loves football the best. His favorite team is the Dallas Cowboys, and he also loves baseball. In fact, in the summer, he is on a special Little League baseball team for disabled children called "The Challengers", and they have just started their season. Johnny is enjoying his third year on the team, and nothing pleases him more than to be playing one of his favorite sports with his friends.
Johnny was born on December 26, 1992, in a little town near Munich, West Germany, and he was the second son of his parents, Hans and Hilda. He has an older brother, Erich, who now lives in New York City, New York. Johnny was born three months premature, weighing in at a "hefty" 2 pounds, and despite his small size, Johnny proved to be a very scrappy little fellow with nothing more than a few breathing problems at birth. Once well (and strong enough) to be released from the hospital, he was put up for adoption, for his mother had died while giving birth to him; and he was then flown to America to be adopted. His brother came to America, too, but he went to New York while Johnny went to Tennessee.
Johnny grew into a sturdy little toddler and seemed destined for a normal life, but then he started showing signs that something was wrong with him. He was clumbsier than usual, and he fell often, especially when trying to negotiate steps. His adoptive parents dismissed it first as problems associated with his being premature, but then his pediatrician suspected that it was "something more", so he had him see a specialist. That was when it was discovered that he had the first subtile signs of muscular dystrophy, a diagnosis that would change (and alter) his (and his family's) life forever.
At the age of two, he became very sick with a viral strain of bacterial meningitis, and in just a few hours, he lay near death; but somehow, through a Miracle, he survived; and he slowly began to recover from the worst of his sickness. Once well enough, he underwent extensive physical and occupational therapy, learning how to walk and then eventually talk again. He was now no longer the same little boy he once was; he now had some physical damage as a result of the meningitis, and he had to make the best with these problems and adjust to a new and different life altogether. He had to cope with not being able to see or hear well, and in addition, he also had to cope with having a speech impediment.
He got his first wheelchair at the age of three, and about the same time, he was fitted with leg braces and got his first pair of Lofstrand crutches. He learned to negotiate around his house and beyond with these appliances; and he was quick to learn; still, it broke his parents' hearts, as they knew that their little son was getting worse, and it saddened them greatly.
By age five, Johnny also started to display handicaps in learning. He wasn't reading or writing as well as he should have been; and it was decided that he would be put into special education, where more intensive one-on-one intervention would be needed; and even with the teacher's help, he still struggled to make passing grades. His grades teetered on the edge of failing, and it dismayed his parents to see him struggling to learn to read or write.
At the age of six, Johnny had a second bout of meningitis, and even though he was still very sick, he somehow managed to escape any more problems with his physical or mental health, and he recovered slowly but surely. He also continued to stuggle in school, and he was determined to overcome his learning handicaps. He was a child who wouldn't give up.
At the age of seven, Johnny was chosen to represent the Muscular Dystrophy Association on the local level: he was chosen to be their Poster Child, and this intailed numerous television and local appearances at different functions or events benefitting the Muscular Dystrophy Association. He met many famous celebrities, and he enjoyed being in the limelight; still, he was too young to understand that his illness was serious, and he took his new role in life like one of his baseball games. To him it was fun and games, and he enjoyed the attention.
It was also during this time when he started to have the first problems with his breathing, and it was also when he suffered his first grand mal seizure.
At the age of eight, Johnny was diagnosed with epilepsy; it was discovered that he had lesions on his brain from when he had the meningitis the first time, and it caused some physical changes and damage to his brain. The seizures were a direct result of that damage. He was now put on anti-seizure medication, and he also had to learn to live with the stigma and uncertainty that so often goes with having epilepsy.
When he was nine, Johnny ended his nearly two-year tenure as Poster Child for the Muscular Dystrophy Association, and he was growing weaker all the time. He now needed a canine helping dog to aid in his daily activities, and he now needed help with getting dressed/undressed, brushing his teeth or hair, and with reaching or getting items on shelves. He also needed to be on supplimental oxygen, as his disease was now starting to affect his lungs and his breathing.
Now, Johnny is relatively stabile (his disease has seemed to have reached a standstill; he really hasn't had any new symptoms in quite a long while); but he is old enough now to know that his disease is fatal and that he is dying. Still, he isn't worried too much, as he has a close and personal Relationship with Jesus Christ, and he feels that this will get him through whatever uncertainty he will face in the near future. He goes to a Pentecostal church each and every week with his family, and he enjoys the fellwoship and worship very much. He is more sad than scared; he is sad because he wants to grow up and do things like have a girlfriend or go on a date, get married or have a family, learn to drive a car, or live long enough to see his first grandchildren; but he now knows that he won't because of his disease. He is sad because he feels he is too young to die, and he doesn't want to do that just yet. He wants to live longer than doctors think he will, and he is angry at having muscular dystrophy. His disease is nothing but a big bother to him.
What Johnny fails to realize that he has lived longer than what doctors felt he would, and he has already surpassed all odds placed upon him. Still, he has trouble realizing this fact, and this is why he has been so moody lately.
He is also entering the threshold of adolescence. He will be a teenager in just a few short years--if he lives that long.
Johnny has certainly been around in his short life; he has seen and done so many things that most people don't get to do in their entire lifetime; and he has acheived so many goals. He has met many famous people, and he has been on national tv more than once, on talk shows or on telethons for the Muscular Dystrophy Association; and he continues to be an inspiration to many, especially to those who live with neuromuscular diseases; as he has shown them that, if given the chance, they, too, can lead a rich and rewarding life.
If I had all Johny's problems I would of been dead by now..
He is most definitely a little Miracle Child!!
Thanks for sharing this incredible story with me..!!
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