#MollysKids: ‘We don’t know’ turns into ‘we think we have an answer!'

#MollysKids: ‘We don’t know’ turns into ‘we think we have an answer!'
Crystal wasn’t being vague. The truth was she and her husband, John, who live in Shelby, truly didn’t know what to do with Weston, their 2-year-old son. (Source: Provided by Family)

CHARLOTTE, N.C. (WBTV) - When Crystal Bridges first reached out, she wrote a winding email that could be summarized with three words:

“We don’t know.”

Crystal wasn’t being vague. The truth was she and her husband, John, who live in Shelby, truly didn’t know what to do with Weston, their 2-year-old son. He couldn’t do typical toddler-appropriate things. Couldn’t walk steadily. Couldn’t catch himself if he fell. Couldn’t pick up a cup of water with one hand. Couldn’t turn lights on-and-off in a room. At the age of 2, Weston was – and still is, actually – unable to do much for himself.

“We don’t know if he needs a wheelchair,” Crystal said. “We don’t know if he needs a different assisted device. And if he does need those things, we don’t know where to get them. He’s living with an undiagnosed and unknown illness. We just don’t know.”

Weston visited Chapel Hill, Duke, and Johns Hopkins for special evaluation. He left all three hospitals with no added information.

“We don’t know where else to go,” Crystal said. “Can you write about our son? It’s a long-shot, but maybe someone will know something who sees it. We are at the end of the road. We don’t know what else to do. We really don’t know where else to turn.”

Her email sat in my inbox for two weeks over the holidays. I had every intention of writing about Weston but, candidly (and embarrassingly), have been behind in getting back into the swing of things.

This week I wrote her, apologizing for the delay.

She replied with excitement.

“I’m glad you waited!” she said. “Because know we do know something! A doctor we saw in April for some genetic tests we’d done in desperation just gave us a call. He thinks he figured out what’s wrong with Weston!”

These genetic panels Crystal and John forgot about showed a possible answer for Weston’s illness: Charcot Marie Tooth disease.

“More testing is needed to confirm if this is what Weston is living with the past two years,” Crystal said. “But phew – this is a needed updated. We now know a name and direction in which to research.”

Keep us updated, Crystal. Welcome to #MollysKids, Weston.

Knowledge is power.

-Molly

*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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