MollysKids helps Charlotte toddler living with tough Rett Syndrome network

(Source: Family)
(Source: Family)

CHARLOTTE, NC (WBTV) - Sometimes the world works in funny ways.

I was first sucked into an email about Lily because of her two cute teeth. (I mean, seriously. How cute are they?) But the note was so compelling I started talking about it out loud to my desk mate and friend Brigida Mack and whoa nelly… that's when karma kicked in.

Lily McKie Edwards just turned two years old. She lives in Charlotte with her parents and has something called Rett Syndrome. It mostly affects girls, all racial and ethnic groups. I almost didn't believe the description her mom Juliann used to explain what that means.

This is what I read aloud to Brigida:

"This rare and quite horrible disease is like having Parkinson's, cerebral palsy, epilepsy, scoliosis and anxiety disorder all in one," Juliann wrote. "Children with this syndrome are known as silent angels as they never develop the skill of speech. Due to loss of mobility in their hands they also cannot use sign language. Communication is through their eyes. Aside from Lily's uncontrollable laughter, she is most certainly our silent angel."

When I looked up from my computer, Brigida had a baseball cap in her hand that said ""

"We just had two ladies on Bounce TV last night talking about this!," Brigida said. "I can't believe we just learned about this horrible illness last night! They gave me this hat and loads of information."

Juliann had written me because she and her husband were looking to educate themselves, seek out support groups and understand how to best care for their daughter. There are fewer than one thousand cases of Rett Syndrome in the United States every year, she said, so it's hard to find others who "get it."

As soon as I read that part out loud, Brigida called her contacts. I called Juliann. They're now all connected.

And in fact… IN FACT!... there is a walk this Saturday at Freedom Park called "Stroll-a-thon" to raise funds and awareness for Rett Syndrome. Begins at 2 p.m. Lots of families affected will be there. Because of the networking that just happened, Juliann and little Lily will be meeting up with the women running the event.

I just love that. So does B-Mack. We're kinda giddy here at our desks on how the timing was so perfect.

I want to be clear on why this illness is so very tough. Babies can seem healthy during their first six months but over time rapidly lose coordination, speech and use of their hands. It often gets misdiagnosed as autism or a developmental delay. There is currently no cure.

You can find more about Lily's fight on her Facebook page, here.

So happy this connection was made! And, welcome to #MollysKids, Miss Lily. It's thrilling to realize others in Charlotte can help navigate your road ahead.

Please keep us updated.


*Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham 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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