St. Louis Bakery Will Help Local Girl in Viral Video Receive Treatment for Rare Disease

Nov 4, 2021 at 2:04 pm

Ten-year-old Lyla McCarty loves to bake. She sells cookies on the side of the road to help raise money for a rare nerve condition called complex regional pain syndrome, or CRPS, a condition she was diagnosed with in February. The syndrome causes excruciating pain in her leg, and there is no cure. One of her biggest dreams is to own a bakery, and there’s only one dream bigger than that one: She wants her leg to stop hurting.

In twin viral videos that have garnered over eight million views on TikTok and over 60,000 likes on Instagram, user Charlie Rocket surprises Lyla with her very own bakery so she can fundraise for the treatment she needs. Lyla’s pop-up bakery will only last for one day, November 7, inside MADE. By Lia’s shop (610 Rue St Francois, Florissant; 314-551-2383) from 1 to 4 p.m. The goal is to raise money with sights set on covering Lyla’s treatment and ten other kids with CRPS.

Treatment is incredibly expensive, Rocket says in his Instagram post, and is not completely covered by insurance. The St. Louis Post-Dispatch covered Lyla’s family’s battle with the insurance company, recapping how the insurance company denied treatment for Lyla three times.

“This Sunday, our bakery will become Lyla’s for the day for her Pop Up Fundraising event,” MADE. By Lia’s Facebook post reads. “It’s going to be an amazing event to support Lyla and her family and we need YOU to help make her dreams come true by showing up! STL, we need you! Let’s show Lyla what our city is all about. My heart is so happy & I can’t wait to see what happens next for sweet Lyla.”

Originally, Lyla’s family had set up a GoFundMe, detailing the plans to get Lyla to Cincinnati's Children’s Hospital for treatment. Often dubbed the “suicide disease” because of its chronic and incurable nature, the GoFundMe has been adjusted to cover future costs of treatment as its passed its goal since the viral videos.

On the McGill Pain Index, the disease has a higher pain rate than childbirth and amputation. In an Instagram video, Lyla details the pain is like getting stabbed or “ants biting me.”

Rocket has already made one dream for Lyla come true: Having a pet pig. He hopes to meet the other goals set, and has plans to set up an online bakery so Lyla can sell her cookies and those who can’t attend the fundraising event on Sunday can still participate. Currently, you can donate on GoFundMe to Lyla.

Follow Jenna on Twitter at @writesjenna. Email the author at [email protected]
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