Molly's Kids: Little Lexi Rae battling better against Arnold Chi - | WBTV Charlotte

Molly's Kids: Little Lexi Rae battling better against Arnold Chiari Malformation

(Source: Family) (Source: Family)
(Source: Family) (Source: Family)
CHARLOTTE, NC (WBTV) -

Lexi Rae, 4, is smiling big. Far cry from what she looked like when we met her last June (picture here).

“Back then we were completely overwhelmed with a diagnosis we’d never heard of,” said mom Jamie Poston, from her home in Cleveland County “Still feels like an uphill battle, but we’re making it.”

Lexi Rae has a birth defect called Arnold Chiari (pronounced as Key-r-ee) Malformation, known as ACM. The base of her skull is not formed correctly and her celebellar tonsils protrude through it, putting direct pressure on her brain stem and spinal cord.

It causes severe pain. For anyone. Especially a young girl who doesn't really even know how to describe what she's feeling. That’s what you see in last year’s picture (I’ll also post below in comments).

Since we wrote about Lexi Rae last year she has had surgery, takes migraine prevention medicine twice a day, undergoes weekly therapy and now has orthotics for her shoes to help with foot and ankle pain.

“She has come far,” said Jamie. “We wanted to update #MollysKids now that her headaches don’t seem as frequent and she’s no longer passing out. She’s also in pre-school and loves it!”

Jamie says watching her daughter work hard to live life is an inspiration to not only her but all the adults in close proximity to their family.

“She has had a lifetime of pain and doctors at just 4 years old,” Jamie says. “But she keeps going. We know she will go on to do great things in her life.”

Thank you, Jamie, for the update on your little #ChiariWarrior.

#MollysKids

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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