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Oct 3, 2008 11:21 pm US/Central
After Mystery, Boy Finally Gets Rare Diagnosis
(WCCO)
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A child with Infantile Neuroxanal Dystrophy usually doesn't live beyond 10 years old.
CBS
For six years, a Minnesota mother searched for the mystery disease that was making her son sick. She finally has the answer.
It was almost two years ago when WCCO-TV first told Zach West's story. Then he was a six-year-old boy losing his eyesight and control of body.
For more than a year Zach was fine, just like any other little boy. His mother, Rachele Chrismer noticed a change though soon after that.
"Until about 17 months his eye turned in and he started walking a funny walk," said Chrismer.
That's when the medical mystery began. His family spent six years taking him to hospitals across the country and six months ago another doctor diagnosed him.
"I went home and researched it like every disease we were told about. It wasn't adding up to him" said Chrismer.
Something else his mom found online was Infantile Neuroaxonal Dystrophy. She asked that Zach be tested, and that's what he has. He's one of less than 100 cases in the world.
Zach's family knows now there isn't a cure for what's taken so much from him. That's why they've given him what makes other boys happy, like hockey, baseball and bowling.
They choose to make the most of each day and not focus on the disease they now have a name for and the likelihood Zach may not see many more birthdays.
A child with Infantile Neuroxanal Dystrophy usually doesn't live beyond 10 years old.
There is a benefit planned for Saturday at Bogart's in Apple Valley to help kids with terminal disorders. It begins at 5 p.m.
(© MMIX, CBS Broadcasting Inc. All Rights Reserved.)
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