Kyah DeSimone loves hip-hop dance, basketball, sleepovers and fashion. But the 13-year-old Bostonian carries a weight on her shoulder that few middle schoolers can imagine: the black purse that powers her partial artificial heart, and the looming prospect of a heart transplant.
Diagnosed with dilated cardiomyopathy at age 10, Kyah lived with the slow stretching of her heart until it became too weak to pump. In October 2012, she was rushed from a friend's sleepover to a local hospital.
"I'm a nursing student, and I knew it was heart failure when I saw it," said Kyah's mom, Danielle DeSimone, recalling the horror of spotting the textbook pattern on Kyah's electrocardiogram.
Kyah was transferred to Boston Children's hospital, where doctors stabilized her with drugs. But it was a temporary fix. She needed a new heart. And until one came, there was only one option: a titanium pump, yet to be approved for children in the U.S., surgically implanted in her chest.