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KIDS DON'T ALLOW CHRONIC ILLNESSES TO END THEIR FUTURES

Guys who struggle with medical keep a tight grip on dreams
May 15, 1995

Many of us are content with our lives and don't bother to worry about problems that Tylenol can't cure. Yes, things could always be better, but mostly we sit and sip our tea, jog our miles and don't think anything at all about what we'll do in the next 15 minutes.

Well, recently we met two kids who deserve a pat on the back for putting up with chronic illnesses.

First we met Billy Muller. Billy, 13, has to go through life with cystic fibrosis, an illness he says "is kind of like asthma but worse."

Actually, cystic fibrosis is an inherited disease that makes the lungs unable to handle normal respiratory secretions. Thick mucus blocks the base of the lungs, which obstructs smaller air passages and causes labored breathing and an annoying chronic cough.

There's worse news. The American Medical Journal says, "The average life expectancy of someone with cystic fibrosis is eight years of age." The oldest person living with the disease is 49.

Well, Billy is five years over the average life span.

When his mother found out about his illness at 6 weeks old, the doctors said he wouldn't live to see age 2. How's that for beating the odds?

The other person we met who is fighting a long- term condition is Nathan Smith, 10, who has had to go through 28 surgeries because he has spina bifida - a disease that probably is as hard to put up with as it is to pronounce.

Spina bifida is a congenital disease diagnosed at birth. The patient's spinal column does not close, and the nervous system is exposed. This often results in paralysis.

Well, Nathan isn't paralyzed and explains his disease with a simple "I have a walking problem."

We asked Nathan about his surgeries, all 28, and he said in a quiet, nervous tone, "I can't remember all of them . . . but the first one has to be when I was born."

However, he remembers how he felt when he was in the hospital. "I was very scared," he said. "I feel like something might go wrong."

Both Nathan and Billy make frequent trips to the hospital for checkups and treatment. For Billy, "they draw a bunch of blood, which I don't like. They give me breathing treatments, where you have to blow into a tube to see how much air you have in your lungs. That's it, and medicine."

We were amazed by the strength of these children and how they are able to put up with the enormous responsibility of taking medicine, let alone going under the knife.

Mornings are the worst part of the day for these guys. "It feels like I don't get enough sleep," Billy said.

They both receive lots of support from their friends and families. When Nathan has a long stay in the hospital - "My longest was three months," he said - one of his parents usually stays overnight in his room.

Billy's family and friends have been great, too. However, he says some classmates were unsure how to treat him.

"They think like if I cough near them, they'll get cystic fibrosis. I told them they won't, and they (are) starting to get used to it."

These children have the same dreams as many other kids in the world. Nathan wants to be a basketball player or singer, although "sometimes I have trouble running when I try to play baseball, shooting when I play basketball."

Billy said, "(I'd like) to become a doctor and do research on respiratory diseases."

This teen doesn't just want to put up with it, he wants to cure it.

These kids look at the future as a green light instead of a dead end.

"Each day, you know, they're talking about getting closer and closer to the cure," Billy explained.

We asked them if they were scared of dying and they both answered with a simple "No," and that about killed us.

To them, death is inevitable. It's around every corner, every visit to the doctor.

As the years wear on, these children could become the next doctors and help turn themselves into the hunters instead of the hunted.

Comments
Billy's Mom
It's November 2009 now. 1995 was eons ago, yet, I still remember your article. I was so proud of Billy. I actually still have the original article. For some unkown reason, I was sitting at home tonite and decided to "google" Billy. I was really missing him. And, lo and behold, I found this article. Billy died on July 13, 2000. He was 19. Please, don't be sad. Billy was young, yet he had a full life in is short 19 years. I can honestly say he was more loved than anyone could be loved. And not just by me. He is still remembered. Not a day goes by without a mention of Billy. His best friend will NEVER forget him. I guess what I wanted to prove tonite was, Billy truly did make a difference, and even tho I didn't thank the young writers who interviewed him back in 1995, you truly helped me today. Make each day worth something. I pray each night you can look at yourselves in the mirror and truly say "today, I did something that mattered". Tonight, you will be able to say that. Thank you, Aurelia LaFera raeme91993@aol.com
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