I just did a story about my little sister, Ronee'; I am now going to do one on my little brother, Johnathon--Johnny, we call him. (By the way, his full name is Johnathon Irwin-Allen Denver Sandusky; his name is even bigger than he is!!)
Johnny is nine, like Ronee', but they couldn't be more different. He and Ronee' look NOTHING alike! For starters, he is blonde-haired, blue-eyed, and has fair skin that has a tendency to burn (especially during the warmer months of the year!). Like his sister, Johnny is quite short for his age, and he is quite skinny, too. And like his sister, Johnny has health problems and noticeable disabilities.
Johnny was born healthy (although several months too early; he weighed just 2 pounds at birth), but when he was a year-and-a-half years old he became sick with spinal meningitis that damaged his brain and caused several physical problems involving his sight and his hearing. He also suffered a stroke, and the stroke affected his one side. (It is still noticeably weaker than the other even today.) He recovered from the meningitis, but as I said, it left him with permanent disabilities that still are with him today. As a result of the meningitis, Johnny has a "stammer" to his speech, and he also is quite deaf (he wears hearing aids), and his vision is poor. (He wears thick glasses, and in order for him to see enough to read he has to get his face very close to a book or to the tv screen to where he can see the picture on the screen.) He also has to put his face close to the paper if he writes or draws.
In addition to all of this, Johnny also has seizures and has to take medications to control them; but even despite the medication he still manages to suffer at least 2 to 3 seizures per week. He also has been diagnosed with Duchenne's muscular dystrophy and now uses a wheelchair to get around (or forearm crutches for shorter trips). The muscular dystrophy was diagnosed when he was about a year old, before he got sick with the meningitis. Sometimes, when he has had a seizure, Johnny has choked on his saliva, and he has then stopped breathing; and it takes the paramedics to come over and try to revive him. It is so scary when this happens because we aren't sure as to whether he is going to pull through the breathing crisis or not.
As you can see, Johnny has a lot of health problems. He also has weak lungs and often has to wear oxygen. Part of this is because of the breathing problems he has suffered in the past.
Johnny is a beautiful little boy. He is small for his age: he looks to be around 6 or 7 (and even shorter when he is sitting in his wheelchair). He has spiky white blonde hair that sticks straight up, big, bright-blue eyes fringed with blonde lashes, a cute little snub nose, a quick smile that brings out twin dimples in his cheeks, and a roundish face that is the color of soft, pale-pink roses (but his face isn't as round as his sister Ronee' 's). He's the type of kid that makes little girls follow him around, as the little girls think he is "just too dreamy" (much to his dismay, as he hates being hugged or kissed, especially by the little girls in his class!). His hair is soft, baby-fine, and is rather flyaway; it never stays combed for long!!
Johnny is all boy, even despite his disabilities: he loves things like Poke'man cards (he loves to trade them with his friends), video games (he is an awesome player; not many people can beat him at video games!!), baseball (he plays on a Little League team for disabled kids during the summer months; he is quite good), and wheelchair sports (basketball and soccer). He is quite active, but because of his weaker lungs and muscles he tires quickly and he often has to rest before he can get back into the game. He also loves to watch sports on tv (baseball and basketball are his two favorite sports to watch; he also enjoys pro football), and he loves to sing and play his keyboards, Cajun accordion, or fiddle. (Like his sister, Johnny loves to sing and perform, and he has performed at several festivals, opening for country stars like Loretta Lynn and Jimmy C. Newman. He, too, has a really good voice; but he isn't into performing as his sister is. But he still enjoys the applause from the audience when he is through singing!!)
Johnny knows about his disease, and he knows he is dying; but it really doesn't bother him all that much--for one thing, he is just too busy being a little boy!! He doesn't really understand why his disease is so bad (which it is), but he hopes a cure is found soon.
He would love to grow up and learn things like driving a car, going on a date, kissing a girl, and eventually getting married and having a family with his wife; but he knows that, unless a cure for muscular dytrophy is found, he will not be able to do any of these things. (Doctors don't think he will survive beyond the year of 13. That is only 4 more years. Not much time at all, if you ask me.)
Like his sister, Johnny is incredibly bright for his age, but he also has learning disabilities which hamper his ability to learn. He has dyslexia and used to have a lot of trouble with reading and writing, but since getting outside help he is doing MUCH better. In fact, this year at school was the best he's ever had!! (His final report card for Grade 3 had mostly B's and a couple of C's. Quite an improvement; he USED to get D's and F's in school.) He is in a class for multiply handicapped students, and his teachers have really been amazed and pleased at his progress.
Johnny is definitely a special little boy, and I am so privileged that he is my little brother! He is a miracle, and his courage is absolutely amazing!! He has overcome so many obstacles as it is, and he never ceases to astound doctors or his therapists with his progress.
Yes, sir, Johnny is definitely a MAJOR blessing in my life!!!!!
Post Addendum: Johnny was the 2000-2001 Poster Child for the local chapter of the Muscular Dystrophy Association; he has even had the honor of meeting Jerry Lewis a couple of times, and he has even gone to the national telethon. He has certainly made a lot of friends, and he has met a lot of famous people, including Ed McMahon, Jerry Lewis, Collin Raye, Loretta Lynn, Hallie Eisenberg, Johnathan Lipnicki, Susan Anton, and Casey Kasem, to name a few. So he has definitely "been around!"
A wicked Cajun Fairy named Robes Pierre entered the impenetrable Magical doll land of Sha Bebe. Queen Faustina, the ruler of the doll land, thought she had destroyed him, but he's back! Will the doll land survive his evil ways?
