3-year-old with rare disease helps raise $500K for inclusive playground
A 3-year-old with a rare condition has helped raise about $500,000 to build an inclusive playground at his school.
Bedford Erickson, 3, has captured the hearts of hundreds of thousands of followers on social media who follow his journey living with a rare condition called Schwartz-Jampel syndrome.
According to the National Institutes of Health's Genetic and Rare Diseases Information Center, Schwartz-Jampel syndrome is a condition where the muscles permanently stiffen and a person has bone abnormalities called chondrodysplasia, both of which can worsen over time. Medline Plus notes that there are only "about 150 cases" of this type of syndrome reported in medical literature.
Bedford's dad, Jesse Erickson, described Bedford's symptoms to ABC News' Danny New, saying, "If you think about how your muscles feel when you're lifting weights, that's how he feels in all muscles."
In some of Bedford's Instagram videos, his mom, Hollie Erickson, can be heard encouraging him as he learns to gradually use a walker, despite his mobility and muscle challenges.
"I know some people might disagree to try to teach tenacity and grit to your 3-year-old but he has risen to the challenge," Hollie Erickson told New.
Many of the videos of Bedford shared on social media show how he has had to adapt to a world not built for people with his condition, including one video of him slowly working his way down the steps of a children's playground.
"If I had all the money in the world, I would make all parks inclusive and Bedford friendly, but he doesn't seem to mind or notice," Hollie Erickson wrote in an accompanying caption.
The videos also captured the attention of a nonprofit called Unlimited Play, that works to build accessible playgrounds
Together, Unlimited Play and Bedford and his family say they have raised about $500,000 in the last year to fund a new, inclusive playground, sport court and pavilion for his Kankakee, Illinois school, that serves preschoolers through 12th graders.
They've since broken ground and continue to fundraise for the project, which they hope to be completed by the summer, according to the Ericksons.
Ultimately, the Erickson family hope to spread a message of positivity and hope.
"Life is hard, but life is also wonderful," Hollie Erickson said.
