BALTIMORE (WJZ) — For Karam Tarazi, each step is a giant leap.
The 6-year-old has a rare genetic disease called Metachromatic Leukodystrophy, which damaged his nervous system.
He’s one of only 10 children in the world with this particular mutation, but his doting mom and dad, Dana Ajilikin and Ousama Tarazi, say he’s special for other reasons.
“He’s a very happy child,” Tarazi says. “All of the time, he’s smiling and laughing.”
Ajilikin and Tarazi left their home and families in Syria more than two years ago, trading in their careers in banking and marketing to come to the Kennedy Krieger Institute for Karam’s specialized care.
“Anything he does, it makes us very happy,” says Tarazi. “Some people take it for granted.”
Here in Baltimore, Tarazi drives for Uber. When Karam grew out of his stroller, they couldn’t afford a new one.
Then the V-Linc organization stepped in.
“We match engineers with people with disabilities,” says Angela Tyler, V-Linc’s volunteer director.
Engineering students from Johns Hopkins University spent a semester-and-a-half volunteering to design a stroller with extra head and trunk support.
“It wasn’t that much work in retrospect to what we achieved,” said Sina Fahimi Hanzaei, a junior mechanical engineering student at Hopkins.
“It changed my life with it because it’s much lighter than his wheelchair and it could fold easily,” Ajilikin says. “And he’s very comfortable in it, too.”
Karam comes to Kennedy Krieger every week for physical therapy. His family says they’re seeing progress and have no plans of going back to Syria.
And now, he has a special set of wheels for the next stop in his journey.
The free stroller was ready on Karam’s birthday.