Community Raises $100K for Girl with CRPS

10-year-old Lyla McCarty has always dreamed of owning her own bakery. You see, Lyla has complex regional pain syndrome (CRPS) and often experiences periods of prolonged and intense pain. But baking (especially cookies!) lets her take her mind off of the pain. According to KMOV, Lyla’s larger St. Louis community recently stood behind her in her efforts. In addition to raising over $100K for her treatments, which insurance wouldn’t cover, the community helped Lyla open shop in MADE. By Lia for a day. 

Take a look at Lyla’s story, and day-long bakery adventure, on this TikTok video

Complex Regional Pain Syndrome (CRPS)

Complex regional pain syndrome (CRPS) is a form of chronic pain which most often affects the legs, feet, arms, or hands. For an estimated 90% of people with CRPS, the pain follows an injury to the affected area (cuts, sprains, burns). Doctors believe that these injuries damage the central or peripheral nervous system. Risk factors include being female, having asthma, or being middle-aged (40~). While CRPS does not often affect those under 10 years old, it is possible. CRPS is variable, meaning it ranges in length and severity. Symptoms include:

  • Excessive, constant, or prolonged pain that may feel like burning or pins and needles
  • Joint stiffness
  • Allodynia (a neuropathic pain), which can make any light touch extremely painful
  • Thin, shiny-appearing skin
  • Skin color changes, swelling, and temperature changes to the affected area
  • Muscle spasms, tremors, or weakness

Lyla’s Story

In February 2021, Lyla and her mother were baking in their kitchen. Suddenly, Lyla fell to the floor, screaming in pain. After a flurry of tests and doctor’s appointments, Lyla was diagnosed with CRPS. In particular, her condition affects her left leg. According to the GoFundMe page, to help raise funds for Lyla’s treatment:

This condition causes acute pain for Lyla, so much so that she loses sleep, misses school, and has even expressed the desire to not be alive anymore.

However, insurance would not cover the treatments. So Lyla’s community decided to rally behind her and her family, raising enough funds for treatment. After Charlie Rocket helped raise over $100,000 for treatment, Lyla also had the opportunity to run a pop-up baking shop. Over 5,000 different community members came to watch her work.

The GoFundMe does admit that, for a while after the pop-up, Lyla needed some time to recover. However, they also shared some good news: due to the philanthropic support and help from the community, her family raised enough money to support Lyla’s treatments!

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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