Evington Girl With Rare Syndrome Inspires Others Across the Glob - WSET.com - ABC13

Evington Girl With Rare Syndrome Inspires Others Across the Globe

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Evington, VA - Many little kids would rather watch TV or play video games than go out on the playground. But for Emaleigh Blankenship, despite all the challenges, it's her favorite thing to do.

She's being featured in a documentary about CLOVES syndrome in the UK.

If you meet Emaleigh Blankenship on the playground, it's clear that she's thoughtful, determined and facing one major obstacle.

"I said, I want you to know that you're special. You're pretty amazing. And she said, 'But mommy, my feet are different,'" her mother, Adrienne Blankenship recalled of a recent conversation with her daughter.

Emaleigh Blankenship suffers from a rare genetic disorder called CLOVES syndrome. It affects only about 100 people in the world and causes fatty tissue to grow throughout the body.

A year and a half ago, Emaleigh had to have surgery because her legs won't stop growing.

"So we've lost all our toes," her mom says, pointing to the scars on her daughter's feet.

Emaleigh's little legs recently took her and her family to the United Kingdom to meet Mandy, an adult with the same syndrome.

The families have been in touch since Emaleigh was diagnosed three years ago and cameras were rolling when they came face-to-face for the first time.

"Yes, it was wonderful to see her and a little scary because we don't know what the future holds for Emaleigh," Adrienne Blankenship said of the meeting.

But the Blankenships know it doesn't matter if the wall's three feet or three thousand feet. Success is determined by the climber's desire.

"She can do everything that you can do. She might find a different way to do it, but she's gonna do it. And it's not gonna slow her down," added Adrienne Blankenship.

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