Watch CBS News

School, Community Help Raise Money For Child With Rare Genetic Disorder

PHILADELPHIA (CBS) — A little boy in Montgomery County is one of only 14 people in the world with a rare genetic disorder, and hoping to help find a cure his school community came together to raise money for research.

This was a special fund raiser at a school in Bala Cynwyd, a school that's embraced a little boy who has some challenges and his family.

Study: People Who Use Sleep Trackers Tend To Be Healthier Overall

Ms. Megan Henry's first grade class at Cynwyd Elementary is learning important life lessons about acceptance and kindness.

At the center of the lesson, 7-year-old Ryan Stearn who has a genetic disorder that causes a variety of issues - including intellectual disabilities.

"He has this way of just capturing you. You want to help him and do more and you get see things through his lens and it's a whole new world every day," Henry said.

Ryan's parents recently learned that he's one of only 14 people in the world with the genetic mutation called PPM1D.

"Somedays can be really stressful and difficult but at same time because he has special needs, when he's able to accomplish things, it's an even greater feeling," Ryan's father Jonathan said.

Now, the family is hoping new research will uncover more about the disorder and eventually lead to a treatment.

"It gives us hope that there is some kind of cure out there," Ryan's mother Elizabeth said.

But the research needs funding, so they came up with "Ryan's Race for Change."

For a week, students and the community donated coins.

"We do this at Cynwyd; we help our children. Children helping children, what better way to have a fundraiser than with something meaningful to Ryan," Henry said.

It's a community they're just getting to know the Stearns who are new to Bala Cynwyd, where they've quickly been surrounded by support.

Ryan's mother said, "We are overwhelmed with the support and warmth of the community here."

During the week-long fundraiser last week, the students at Cynwyd raised $3,500.

They learned even the smallest amount of change can make a big difference when they come together as a community.

View CBS News In
CBS News App Open
Chrome Safari Continue
Be the first to know
Get browser notifications for breaking news, live events, and exclusive reporting.