With the hopes of allowing her son PJ’s differences to teach others to be kinder and more accepting of differences, Stevenson Ranch resident Crystal Kouri Reynafarje has dedicated herself to spreading PJ’s story near and far.
PJ, 3, was born with Treacher Collins syndrome, which most people are familiar with through Auggie Pullman, the fictional character from the movie and book, “Wonder.”
The syndrome affects facial development, often leading to difficulties breathing, eating, hearing and seeing.
Treacher Collins is extremely rare, affecting only one in 50,000 people, with PJ and only one other being the only known cases in Los Angeles County.
PJ has had five major surgeries to enable him to grow so far, and will need more as he continues to grow, but he’ll still look different, which is why his family has dedicated themselves to the cause.
The “Wonder” movie came out around the time PJ was born, and so, too, was the “Choose Kind” movement born, which works to combat bullying by teaching elementary school students the value of kindness and inclusion.
It wasn’t long before Reynafarje realized the opportunity she and PJ had to create a teachable moment for other children, allowing PJ to show them that differences are OK.
“You’re going to stare, you’re going to have questions the first time you see anybody who’s different … and that’s normal,” Reynafarje said.
Introducing kids to PJ helps to turn these first-time interactions into a learning experience, teaching kids that not everyone’s the same — and that’s OK.
“Meeting a real-life ‘Auggie Pullman’ helps bring the book to life and exposes children to differences,” Reynafarje added.
PJ and his mother, Crystal, have since traveled to schools across the country as certified “Wonder Speakers” with the Children’s Craniofacial Association, reading “Wonder” and answering questions about PJ’s differences for students from kindergarten through second grade, and have raised more than $75,000 to help other kids with Treacher Collins thus far.
As PJ has grown up, he’s begun to learn from the experience, as well, Reynafarje added.
“He’s learning to advocate for himself by listening to me,” she said, adding that students are often excited for his visit, treating him almost like a celebrity. “I think it’s also a positive experience for him to walk into a school where everybody knows he’s coming and are welcoming him.”
Reynafarje hopes she can not only help PJ learn to advocate for himself, but also help to make the world a kinder, more accepting place where people can learn to look past differences and see PJ the way that she sees him.
“I don’t really want him to be known as ‘the boy with Treacher Collins,’ but rather ‘the boy who speaks in schools, encourages kindness and raises money for children with special needs,’” Reynafarje added.
Finding unique ways to continue giving back
Unable to speak at schools in person through the pandemic, Reynafarje and PJ have transitioned to virtual visits, but wanted to continue finding ways to do more, so Reynafarje got creative and has been fundraising by teaching free, socially distanced kickboxing classes.
“I’m a certified group fitness instructor … and COVID had all the gyms closed, so I thought, ‘Well, let’s go to the park and work out,’” Reynafarje said, adding that the group chose to pick a different charity to donate to each month.
The group has since raised more than $1,400 to send “Wonder” books to all of the elementary schools in the Santa Clarita Valley, along with more than $2,500 for other local nonprofits, such as the Child & Family Center, College of the Canyons’ Resources for Individual Success in Education (RISE) Project and The Gentle Barn, among others.
Reynafarje has spent the past few months creating “Wonder” packages, which include the book, “Wonder” curriculum, inclusive coloring books, and more information about PJ and his story, to deliver to all of the elementary schools in the SCV.
“My ultimate goal is to speak in every school in Santa Clarita,” Reynafarje said, adding that she and PJ hope to begin visiting schools again next year, but are set to continue doing virtual presentations for the time being.