His story: When Marqus Valentine went to junior college, he serendipitously took a film class, fell in love with the medium, and decided to use it to document his daily struggles with SCD, which have been lifelong. He posted his musings online and eventually turned them into a mini-documentary. It was his way of honoring the many friends he’d lost to the illness—and it led to his co-founding, with his sister Ashley Valentine, of Sick Cells. It is an organization that encourages the sickle cell community to influence public policy and awareness by sharing their own stories. Marqus Valentine’s dedication has grown—he personally appeared before a Food and Drug Administration (FDA) panel to lobby for sickle cell drug development, and last year made a successful pitch for approval of the drug Endari (L-glutamine oral powder).
Aha moment: “I realized people never see you when you’re sick. Either you’re very, very sick or have transitioned out of the hospital looking healthy. So when I was sick I’d just sit in my room talking into the camera. Other days I’d strap on an IV and go out, and talk to people. I really wanted to educate them—and I had an audience that was listening.”
Unimaginable hurdle: In 2015, he got so sick from a series of ailments and infections stemming from leg wounds that doctors were almost certain he was at his end. “I was in such bad shape that my siblings were called home to say goodbye.” When he finally recovered from the worst, he had to spend months learning to walk again.
How he survived: “When I was younger, people would say I’d never make it to 30, so I decided I had one of two choices—to fall apart or get it together and decide I’m going to live. With my sister, mom, dad, and brother, I’ve made it through. I’ve had a whole team helping me fight to live.”
His dream: “My greatest hope is to have more treatment options for the next generation and a proper means of educating themselves. I want them to grow up and not hear, ‘You won’t make it to 30.’”