Johnny's biological brother, who is 15 1/2, writes about his younger brother, Johnny, 11, who is terminally ill with a neuromuscular disorder and why he misses him so much. (Erich and Johnny were adopted by different families: Johnny lives in Nashville, Tennessee, and Erich lives in New York City, New York.)
You may not remember me, but my name is Erich. Erich Trachtenheimer is my name, and I am fifteen and one half years old. (I'll be 16 years old this year.) I live in New York City, New York, with my family, the Trachtenheimers, who adopted me when I was small. I have a younger brother, Johnny, whom I haven't seen since about two years ago, and I really miss him.
You see, Johnny and I don't live together. We live in different states, with families; he was adopted when he was a baby, and he now lives in Tennessee, in Nashville, while I live here in New York City. I last saw my brother about two years ago when I went to Tennessee to visit him, and I hear now he isn't doing as well.
My little brother has Duchenne's muscular dystrophy. This was diagnosed when he was about a year old or so; and doctors, at first, didn't think he would live to see the age of five; but now he is eleven, and he has been amazing doctors with his spunk, courage, and will to live; he has already lived five years longer than doctors first thought he would. His muscles are weak, and because of it, he is often in a wheelchair, and he wears braces upon his legs; and he sometimes walks for short trips, but he uses crutches to do that. Usually, though, he is in his wheelchair. He is also starting to have problems with his heart and breathing; this is a sign that his disease is getting worse; and to tell you the honest to God truth, it scares the living f*** out of me because I don't want my brother to die so soon; he is just a kid, and he deserves to have a chance at living a full life, not worrying about whether he is going to die or not, or WHEN!
Johnny has been through so much in relation to his health: besides the muscular dystrophy and all the hassles that goes along with it, he also has to put up with having epilepsy and seizures (he is on medication to try to control the seizures), he is visually and auditorily impaired (due to an attack of meningitis he had when he was about a year-and-a-half old; it also left him with brain damage and speech problems), and he also has learning difficulties and has only recently started doing so much better in school.
I personally don't know how one little kid like my little brother can put up with all this shit that has been going on in his life; if I were him, I'd be looking for a way to end it all, or I'd be locked up in some loony bin someplace! But Johnny has more courage and more spunk inside that little body of his, and he doesn't let his problems get to him, even when they threaten to overwhelm him. He is the happiest little kid I know; and he always has such a positive outlook on life. He also has a faith in God that can't be moved, and if one can learn anything from my little brother, it's how to get through life's every day problems or struggles with a positive attitude!
I love Johnny with all my heart, even with all his getting the extra attention because of his health and disabilities; but he is still a great kid. He can make you laugh when you feel more like crying, and he can beat your buns off at games like Tetris or any video game; to me, he is the Master Game Player; not many people can beat him, he's that good! He also loves to sing or play the piano, and he has seen many of the big name country stars in concert (and has met them, too!). He also has met many celebrities of TV and movies, and he has really gotten to do a lot of neat and exciting stuff! In a way, I am jealous of Johnny because even though he is younger, he has done a lot more than I have at the age of fifteen going on the age of sixteen--and he is only 11!
I sometimes wish that it were I that were getting all the glory instead of Johnny; but then again, I wouldn't wish to suffer like he is at the present time. I wouldn't wish anything like muscular dystrophy on my own worst enemy, and to see its cruel manifestations on my little brother is more than my heart can take! I wish desperately that a cure could be found so kids like my little brother can at least have a chance at life and have a chance of being cured of this insidious disease (or ANY other neuromuscular disease, diseases like Friedrich's Ataxia, Lou Gehrig's Disease, Myesthenia Gravis, or Spinal Muscular Atrophy, to name but a few)! I have seen my little brother go from a very active toddler to a kid in a wheelchair and braces on his little legs; and it seems each year he gets worse somehow; and nothing much really can be done. This is probably what is the hardest thing to deal with my little brother's sickness because if it weren't for our family genes, he wouldn't even HAVE this stuff! (My mom had the muscular dystrophy gene in her when we were born, but Johnny was the one who got the disease while it skipped me. I didn't know all this until I asked my adoption lawyer about this, and he went through the records when I was trying to find information about my little brother. I found out I had a brother named Johnny [his real name is really Johannes, but I have always called him "Johnny", as has his adoptive family] when I was about six, and it was a total shock; but then, as I found more in the way of information about him, the more I wanted to meet him, which I did, eventually; and now we are very close, even though we live in different states.)
This summer, I plan on going to Tennessee again to see my brother; my little brother isn't able to travel as well as he once was able to, due to his delicate health. I want to see Johnny again while he is still around, and I want to be able to do things with him while he still is able to. I know it will be hard, knowing that his disease is worse, and he is now using oxygen to help his breathing and his heart; but he IS my little brother, and I want to be there for him before he gets to be TOO sick or before he dies! I still love him with all my heart, and I want to let him know that as long as I am able, I want to be there for him, and that I care deeply for him, even now!
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