When Michelle Sie Whitten established the Global Down Syndrome Foundation five years ago, her mission was to give a face to those within the community. And there’s hardly a more glamorous way to move into the spotlight than to don beautiful clothes and take to the catwalk. Of course, including a bevy of famous friends doesn’t hurt either.
“As a philanthropist, I go to a lot of charity events and [notice that] the people that are being served are often invisible,” Whitten said. She went on to create what has become the largest fund-raiser for Down syndrome in the nation, the annual Be Beautiful Be Yourself Fashion Show.
Since its inception in 2009, the event has raised more than $3 million for Down syndrome research, medical care, and education. Last Saturday, the show was held in Denver to celebrate it’s fifth anniversary.
The models are of all ages, from various parts of the world, living with Down syndrome.
One of them is 7-year-old Samantha Stevens of Marlborough, a 2012 Global Down Syndrome Foundation Ambassador, who participated in the show for a second year.
Because of the severity of her condition, Samantha requires the assistance of her father, Brian, and a wheelchair for mobility. But according to dad, Samantha’s health has seen major improvements over the years, and with intensive physical therapy she may someday gain full use of her limbs.
“We’ll be back,” Brian Stevens said, “and Samantha will be walking down that runway on her own.”
Brian and his wife, Kathy, devote their time to Down syndrome advocacy and awareness.
Meanwhile, their Marlborough home is currently undergoing renovations aimed at improving Samantha’s quality of life, including a central air humidifying system and a harnessing system for physical therapy.
These improvements are not only for Samantha’s benefit, but also for others living with severe disabilities. The Stevens say they plan to invite out-of-town families to stay at their home when visiting the area, offering more affordable and accommodating quarters than a hotel.
When she is not working it on the runway, Samantha goes to school, attending homeroom class in the morning and spending the rest of her day with speech and physical therapy specialists. At home, she enjoys listening to music and watching television with her family.
“We really admired the fact that they haven’t let medical issues [and the] challenges Samantha faces get in the way of having her be a part of society,” Whitten said of the Stevenses.
Steph Hiltz can be reached at firstname.lastname@example.org.