Steven’s Story

On the outside, 19-year-old Steven appears to be a mild-mannered and soft-spoken young man. But inside, he’s fearless — and once he starts talking, his personality explodes.

“He’s willing to try anything,” says his mom, Linda. “He’s been parasailing, loves roller coasters, and he’s going indoor skydiving this summer. He’s very determined.”

In June, Steven participated in commencement ceremonies with his graduating class at Spring-Ford Senior High School in Royersford, PA. He has a busy summer planned, with vacation, Camp PALS, playing basketball, batboy for his brother’s travel baseball team, hanging out with friends, vocational training at Variety Club Camp, and some old-fashioned R&R all in the mix.

Despite the hustle and bustle of his day-to-day life, Steven has his eye on a bigger goal: college. His ultimate goal is to attend the College of New Jersey’s Career & Community Studies Program, a two-year certificate program for students with developmental disabilities.

“I want to study American history,” Steven says. “I really like learning about the presidents and the World Wars and politics. I watch the news every day. President Trump is on there a lot — sometimes it’s for good stuff and sometimes for bad stuff, but it’s all interesting to me.”

Steven will encounter some obstacles as he works toward his goal, but he’s determined to face them head-on — just as he has faced other issues throughout his life. Diagnosed with Down syndrome in utero, Steven is healthy but has weathered a few medical challenges including multiple surgeries: reconstructive intestinal surgery the morning after birth, strabismus eye surgery as a baby, tonsil and adenoidectomies, wisdom teeth extraction, and emergency hernia surgery.

Steven has also worked with a speech therapist for most of his life to address a stutter. A few years ago, he wrote a letter to James Earl Jones, a former stutterer who went on to become a famous actor and the voice of Darth Vader in Steven’s favorite movie series, Star Wars. “I asked him how he dealt with his stutter and he sent me two autographed photos,” Steven says. “It was really cool.”

As part of his vocational training through Spring-Ford, Steven has already worked at a handful of different jobs, including at the front desk of the YMCA, at the Montgomery County Intermediate Unit, in a thrift shop, and at two restaurants. He hopes to one day be an entertainer or a videographer.

“My hope for Steven is that he can find a job he enjoys,” Linda says, “and that he’ll be able to live independently.”

Steven is a Patient Champion for the 2017 CHOP Buddy Walk, the single largest fundraiser to support research and care for children and adults with trisomy 21 at Children’s Hospital of Philadelphia.