A little boy with muscular dystrophy learns to have a fulfilling life, even though life is becoming more of a daily struggle for him.
Johnathon ("Johnny") Sandusky was ten years old, and he was a beautiful little boy, as far as appearances go. He had soft, flyaway white-blonde hair worn in a spiky style, big, luminous bright-blue eyes, and a heart-shaped face the color of pale pink roses. He was in a wheelchair and wore clunky, heavy metal-and-leather braces upon his stick-thin legs because he had a progressive neuromuscular disorder that was diagnosed when he was just learning to walk.
Johnny used the wheelchair most of the time because his disease had progressed to the point to doing most anything tired him out and left him feeling incredibly weakened; and he was also now starting to have problems with his breathing. He often wore oxygen prongs in his nostrils because he got out of breath fairly easily, and he was prone to respiratory diseases like the common cold or pneumonia. For shorter distances, he used two forearm (Lofstrand) crutches; but he mainly used the wheelchair because it was much easier for him to get around, plus he didn't get tired as quickly as he did by using the crutches.
Doctors didn't hold much in the way of hope for his surviving into adulthood; in fact, they were saying that he didn't have much time left, and it was doubtful that he would live to become a teenager. But despite that grim prognosis, Johnny was a boy who cherished life; and every day meant so much to him.
He was the type of boy who still liked to keep fairly active; and he loved going to school (he was now in the fourth grade), being with his friends, playing video games (he was a pro at it; not many kids his age could beat him, he was that good), going to country music concerts and meeting the stars backstage, being with his family, and reading. He also loved to draw and write stories or poems.
Johnny lived with his adoptive family in Nashville, Tennessee, and they all doted on this little boy with the pleasant, easygoing (if somewhat shy) personality. They meant everything to him; and they did all they possibly could to ensure a normal life, even when life for him was anything BUT normal. He was the first child to be adopted by the Sanduskys; he was just a little baby of nearly three months in age when he was adopted. Ever since, he brought the family much in the way of inspiration and hope, even when life for him was such a daily struggle.
Besides having muscular dystrophy, Johnny also had to cope with learning disabilities, hearing and vision impairments (all due to a bout of meningitis he had when he was nearly two years old; the effects of the disease left some lasting physical and mental deficits), epileptic seizures, and now with breathing problems that required breathing treatments, oxygen, and medication on a daily basis. So life for this little Miracle was hard and full of trauma and uncertainty.
Johnny, if anything, was good at teaching people how to accept others despite having "differences" or disability, and he also was good at letting others know of his faith in his Lord and Saviour, Jesus Christ. He became a Christian nearly two years ago in July, and he loved going to church each week. He carried the fact that he was a Christian like a flag, and even though others teased him about his faith and his disabilities, Johnny was more than determined to overcome his limitations, and he wasn't about to let others bring him down. He had done so in the past, but now life was so much better for him, and now that he had God on his side, things were looking quite rosy indeed.
Johnny also had another important element in his life: the companionship and aid of a very friendly helping dog, "Ginger", a Golden Retriever, who served as his canine helper. The dog was his arms and legs; and she also was his buddy. They ate, slept, and played together, and Johnny relied on her like a true friend. "Ginger" was also good at alerting his family whenever her young master fell out of his wheelchair in a seizure or had some other health crisis; and she had saved his life on several occasions. Yes, both "Ginger" and Johnny were the best of buddies; and their love for one another grew deeper by the day.
very inspirational and beautiful read. thank you for writing about this courageous little boy. he came vividly to life in my mind...well done! :) (((HUGS))) and love, karla. :)
Edie Batstone's first book of colourful picture poems invites us to jump into a child's world of wonder and possibility, just as a child jumps into a puddle - knowing only that it seems like a good idea at the time! Join her on this journey of disco
