Williston boy survives surgery for rare disease

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December 17, 2006

A 10-year-old Williston boy was diagnosed with one of the most uncommon diseases in the world, especially for children. Now he's back at home recovering.

His mother says she couldn't have asked for a better gift this holiday season.

Just like any other 10-year-old boy his age, Shane Turner likes playing video games.

But Shane isn't just any other kid.

Back in September, he was diagnosed with a disease called GIST--short for Gastrointestinal Stromal Tumor, a type of sarcoma.

The condition is so rare in children, the GIST cancer research website claims there are only about 20 documented cases.

Shane is one of them.

"It's unusual in adults, and it's almost unheard of in children," says Shane's mom, Laura Turner.

Laura says Shane was complaining of being tired all the time, but she didn't think anything of it.

"I just wanted to sit on the couch and sleep," Shane said.

But when she took him in for a yearly checkup, doctors noticed something was wrong. Two months later they found not one or two tumors in his stomach, but five.

"I was mad," Laura said. "Who isn't? It's not fair your child gets this. It's just unjust. But at the same time I realize bad things happen and you can't control it."

Because GIST was only recognized as a disease in 1998, only two medications have been cleared to treat it. Those medications are only for adults...Shane's only option was surgery.

They flew to Texas on December 7.

Laura says she sat through the most nerve-racking 4.5 hours of her life: "The most frustrating thing is not knowing what's going on or not having any control."

Now Shane's back at home with nothing more than what they call a "zipper" on his chest. Life's back to normal for a kid who's anything but.

"I'd call it a miracle," Laura said. "I'm just so happy we have another chance."

According to the GIST cancer support group Life Raft, there are new drugs being tried in a few pediatric GIST patients, but it's still too early to know how effective the drugs will be.