Metro boy has disease that causes white matter in brain to vanish

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PECULIAR, Mo. -- Isaiah Jones began walking late at 15 months old.  That didn't end the worry for his mom.  When Isaiah would fall, he couldn't lift himself up.

"He would just fall on his face, he would just fall straight forward," said his mom, Bethany Jones.

And his walk became wobbly.

Now almost five years old, Isaiah has lost his ability to walk, talk and eat by mouth because the white matter in his brain is simply disappearing.   There's no way to stop it.  It's a disease called Vanishing White Matter, one in a group of genetic disorders called leukodystrophies.

Jones says sometimes when Isaiah awakens at night, he doesn't remember who she is.

"It's just hard to understand because he's so little.  It confuses you, too," said Jones.

She says Isaiah is one of 129 people in the world living with Vanishing White Matter.  Most of those with early-onset disease like Isaiah's live only about three years after diagnosis.  Isaiah has lived that long.

"We have pretty much accepted that Isaiah won't see a cure in his lifetime," she said.

But she knows others could.  She's organized the first Isaiah's Walk to Cure VWM . It's this Saturday, October 3, at 8 a.m. at Memorial Park in Raymore.  Proceeds will go to research being done at the University of Tel Aviv in Israel to find a way to slow or stop the destruction in the brain.

The single mom says whenever she's stressed, all she has to do is look at her son.

"Why am I being upset about this?  He's the one going through it and he's still smiling and he's still happy," Jones said.

In Isaiah's big, beautiful grin, she finds the will to go on.