Amelia’s journey is taking her to Texas

BECKLEY, W.Va. (WVVA) - When Amelia Butler, 5, was born, she was quickly diagnosed with a rare and incurable genetic disorder called Prader-Willi Syndrome.

According to Dr. Jennifer Miller, a professor in the division of endocrinology at the University of Florida, who treated Amelia last June, the disease affects 1 in 15,000 people. Miller explained that Prader-Willi manifests in infants who are missing part or all of Chromosome 15, which comes from their father’s DNA. It can lead to food cravings and weight gain, behavioral issues, cognitive impairment, poor growth and more.

“It’s hard,” Miller said. “It’s a hard disease. If any disease touches any aspect of your life it’s this one. There’s literally not a thing you can think of of the human body or your environment that it doesn’t affect...”

While each case of Prader-Willi is different, Butler went into specifics about how it presents in Amelia. She says it affects her daughter’s body inside and out.

“Part of her brain that tells her if she’s full or hungry, it doesn’t work, so she genuinely, 24/7 is starving to death...She has no metabolism. She has severe low muscle tone.”

To look at Amelia, you’d never know she’s spent more of the last five years in the hospital, rather than at home with her parents and sister. She’s just a little girl, who has a contagious laugh and loves “Annie” the musical.

“She’s just special,” Butler said of her daughter. “I couldn’t, honestly, even though, you know, days are hard, and life sometimes isn’t easy- I couldn’t imagine it any other way and without her being the way that she is.”

Despite her happy demeanor, Amelia’s journey hasn’t been easy. Her days are often filled with traveling out of state to attend numerous doctor visits as they work to ease her pain.

Next month, she and her family will be headed to Texas to see a new specialist.

“Her health has just been so bad this past year. She keeps getting a lot of lung infections and other things, and her sleep apnea is getting worse, not better. We’re just trying to see if there’s a doctor, who can help at this point to make her healthier and have a longer life span.”

To help raise money for the trip, an event will be held on Saturday, March 25, at Glade Creek Farm in Cool Ridge. Butler says local businesses- like El Mariachi in Beaver and Sam’s Club in Beckley- and individuals have pulled together to donate food, resources and time...

All in the hopes of getting Amelia the care she needs.

“The fact that there are still such good people in the world and in our community that are willing to help her...it’s amazing that people care so much,” Butler shared.

Saturday’s fundraiser will kick off at 6 p.m. and feature live music, games and more. One person is even going home with a brand-new grill. The event is free to the public, but donations are encouraged as they will go toward covering the cost of gas, lodging and food on the trip to Texas.

The Butlers will be headed to the Lone Star State on April 10. Click here to access the trip‘s gofundme.

To learn more about Amelia, visit Amelia’s Journey on Facebook. You can also help kids like Amelia by giving to the foundation that was created in her name. The foundation has an account set up through Pioneer Community Bank. Contributions can be sent to Amelia’s Journey Foundation or Amelia Butler at 1038 PO BOX 319 North Eisenhower Drive in Beckley.

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