Maylan Chavez, who is living with SMA, is the subject of Dan Perez's photo series “Living with Spinal Muscular Atrophy: Maylan’s Story.” They met at an overnight camp for ventilation-assisted children in 2011. (Dan Perez Photography)

Dan Perez, a South Florida-based photographer and filmmaker, first documented the Nicklaus Children’s Hospital’s Ventilation Assisted Children’s Camp (VACC) in 2011. That year, Perez met Maylan Chavez — a young woman the camp’s volunteers gravitated to. “She was beautiful, wicked smart, wicked funny, and she handled her disability with a grace that most of us could never comprehend — much less ever possess,” he wrote on his website. Like many other children who attend VACC, Chavez has spinal muscular atrophy (SMA).

Since Chavez, 28, aged out of the camp in 2016, she and Perez have stayed in touch, with Perez keeping up to date on her activities via social media. One series of her social posts — titled “Living with SMA means:” — inspired Perez to partner with Chavez to document a day in her life.

“Living with Spinal Muscular Atrophy: Maylan’s Story” is a two-part series of black-and-white photographs documenting Chavez’s lived experiences with SMA. Accompanied by Chavez’s thoughts and reflections (and Perez’s occasional interjections), these photos present an honest, poignant view of what life with SMA looks like. It shows moments of gratitude, moments of vulnerability and trust, and moments of everyday normalcy.

In part one of the series, Perez documents Chavez’s morning routine, from awakening in her adjustable bed to showering, dressing, and doing her makeup. One of the most important parts of this routine, Chavez wrote, is applying her “bright, bold lip” color.

“The one thing I can do is my lipstick. And have you no doubt that I make sure my lipstick always looks immaculate. I don’t ever let anybody else do it for me,” she shared. The accompanying photo shows Chavez checking her lipstick in a handheld mirror.

Chavez’s confidence shines throughout the series. “Boy, I am here to tell ya that in all my disabled goodness, I can still enjoy and live out the pleasures of dressing up and looking cute,” she wrote.

You can see part one and part two of Perez’s and Chavez’s photo series on Perez’s website.