Lemonade Stand Raises More Than $400 for PC Research.
A neighborhood lemonade stand raised more than $400 for PC Project on June 13 while helping friends, neighbors, and community members learn about PC.
The fundraiser was organized by Taelor Rynearson, along with her sister Morgan and nieces Hazel, Millie, and Posie, in honor of Taelor’s younger sister, Rylee Defebaugh, who lives with PC.
When sharing the fundraiser with their community, Taelor explained why supporting PC research was so important to her family.
“My younger sister, Rylee, was born with a very rare condition called Pachyonychia Congenita (don’t hurt yourself saying it). It causes hardened calluses on the soles of the feet, thickened nails, and VERY painful blisters. While the exact number is unknown, only about 10,000 people have it in the world. Unfortunately, my sister has one of the worst cases.”
Taelor described the many ways PC has affected Rylee’s life.
“Growing up, she only crawled around the house. She can’t walk far distances and if she does have to, she uses a wheelchair.”
Sports were never an option because even swimming caused pain. As an adult, finding a career has been equally challenging.
“She even went as far as going to school and flying planes by herself, only to be told later that she wouldn’t be able to get the license she wanted due to her physical limitations.”
For years, the family chose not to draw attention to Rylee’s diagnosis.
“We didn’t make a big deal out of her diagnosis because we wanted her to have a normal life, and because of that, many people don’t even know she has it.”
Because PC is often an invisible disability, Taelor says many people misunderstand what Rylee experiences every day.
“Because her condition isn’t always visible, she might look ‘normal,’ but it is deeply frustrating to watch people judge or stare when she limps or needs to use her wheelchair.”
Although there is currently no cure for PC, the disease has become more painful over time.
“As she gets older, her condition has become more painful, and I’m tired of watching her suffer in silence. She isn’t a little girl anymore and is entering a phase of life where her health deeply impacts her future, and it’s time we start talking about it.”
That desire to start the conversation is exactly what made the lemonade stand such a success. Beyond raising more than $400 for research, the event introduced dozens of people to PC and helped make an often-invisible condition more visible.
PC Project is grateful to Rylee’s sisters, nieces, friends, neighbors, and everyone who supported the fundraiser. Their generosity not only raised funds for research but also helped shine a light on the daily realities of living with PC during PC Awareness Month.
Thank you for helping #MakePCVisible.
