A definition of Juvenile Scleroderma in simple, easy to understand language


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Basketball saves Allyson Stone's life in fight against rare disease
permission to copy from Larry Stone
Natalie Miller runs up the floor on a fast break, looking for a pass from Allyson Stone, her fourth-grade CYO teammate. She sees her good friend's chest heaving. She sees her practically groping for another breath.

"Back then, I was worried," says Natalie, who five years later still is a teammate of Allyson's. "I could see her breathing hard. I wondered if she was OK. I didn't really know what she had, what it was."

Coach Kirsten Brockman, a former player on the University of Washington women's team, pushes her players hard, ordering them to sprint another set of demanding "Sweet 16" conditioning drills.

She keeps a watchful eye on Allyson, looking for a sign she is pushing too hard.

"I said to her, 'If you ever feel like you can't do this, please don't do it,' " Brockman says. "But she would always tell me, 'No, I can do it.' She would never quit. Sometimes after the running drills she would just be gasping for breath, but she just kept doing it, every time."

Basketball saved Allyson Stone's life.

"I know it did, I really do," says Allyson, 15, now a point guard for Kennedy High School's ninth-grade team. "It got me out of the hospital room. It gave me something to work at, instead of just sitting around feeling sorry for myself."

When she was 9, Allyson was diagnosed with a rare disease called scleroderma that literally means "hardening of the skin." It mostly attacks women between the ages of 30 and 50.

Even though, in many cases, the disease can be managed, there is no cure and it often is fatal. Over time the disease can attack internal organs, including the heart, kidneys, blood vessels and, in Allyson's case, the lungs. Another side effect that hit her hard is acid reflux.

"It was pretty scary," her doctor, Anne Stevens, of Children's Hospital's Rheumatology Clinic, says.

In the early stages of her disease, Allyson received monthly chemotherapy treatments for six months. Her condition worsened. Daily chemo treatments were prescribed for the next six months. She improved and treatments went to every other month, then every three months, then every two years.

"All through her treatments, she kept playing basketball," Stevens says.

Even chemo couldn't keep her off the court. Allyson was falling in love with the game. It made her forget about her illness. The game told her she wasn't vulnerable. The game gave her purpose. It was transforming.

"I liked the motion of the game," she says. "It was so intense and so hard and it looked like something that would be so much fun to play. I fell in love with it the first time I saw it."

During one of her stays at Children's, Allyson became friendly with then-Washington assistant basketball coach Sunny Smallwood and many of the players, including Loree Payne and Brockman. They came to inspire Allyson, but soon they realized she was becoming their inspiration.

"She was so strong about what she was doing," says Brockman, whose college career was shortened by chronic problems with her feet. "So I kind of had to have that aspect that what I was going through really wasn't that bad. There's really not going to be any fatal ending with my feet.

"She never made an excuse out of her disease. I mean this girl was playing her little heart out and she only has 70 percent lung capacity and it's not going to get better. Then, as it turns out, it did get better. She's always been willing to go at it 100 percent. She's an amazing kid."

Even with diminished lung capacity, Allyson played through the shortness of breath. Even knowing her disease often is fatal, she stayed out of bed and stayed in the gym.

"People told me I shouldn't overdo it," says Allyson. "But that never really stopped me. I'm pretty stubborn like that. I never really thought about dying. I never thought negative thoughts. I just thought those kind of thoughts would make me worse. So I would go in and get my treatments and then go on my way."

Basketball saved Allyson Stone's life.

"I visited her in the hospital once and I knew how much she wanted to play basketball," teammate Natalie says. "I saw her there and it really hurt me that she couldn't play. But she always came back and started playing again. She's a great role model. A lot of people look up to her on the court. She taught me to always look to the future and something good will always happen."

The odds said Allyson Stone would be dead by now. She never bought into the odds. She fell in love with basketball and it loved her back.

"The disease is like a technicality to her," Brockman says. "It's just a technicality that someone said to her that she was already supposed to have left us. But she's definitely not going anywhere.

"She's heroic. She has this physical toughness and an unbelievable heart. And in addition to being extremely driven, she is this really lovely person. There is something so courageous about her. She is dealing with something where the odds definitely were against her and it absolutely didn't matter."

Basketball saved Allyson Stone's life.

"It has given her a spiritual lift," Stevens says. "I wouldn't be surprised if she lives to be 80."

Stevens has gone to games to observe her patient. She is asked what she thinks when she sees Allyson leading another fast break.

"It's like watching a miracle," Stevens says.


For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

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