Riley: Making Her Mark

Alissa McDonald was settling into her hectic new reality as a mom of two when she got the phone call that changed her life. Baby Riley’s routine newborn screening had come back positive for Severe Combined Immunodeficiency (SCID), often called “Bubble Boy Disease.”

Though she seemed fine, the 3-week-old lacked a functional immune system, making her highly vulnerable to infections. “She looked perfectly healthy,” Alissa recalls. “We had no idea.”

Luckily for Riley, a national leader in SCID research and treatment was close to home: UCSF Benioff Children’s Hospital San Francisco. UCSF’s Dr. Jennifer Puck created the screening test that caught Riley’s SCID, and Dr. Morton Cowan is leading the development of a novel gene-therapy cure.

These experts had to move quickly to save Riley’s life. She would first undergo grueling chemotherapy followed by a bone marrow transplant at just 3 months old, then remain in isolation as her body created an immune system.

“It was amazing to see how invested the team is not just in the modern medicine that they’ve advanced but also in watching it work for kids,” Alissa says.

For months, the hospital was Riley’s home, and the staff became like family, from nurse Francis “the Ninja,” who could start a blood transfusion without waking anyone, to Dr. Chris “Cheerleader” Dvorak, whose contagious optimism gave them reason to hope.

“I don’t even know how it’s possible to have that many amazing humans in one place,” Alissa says.

When Riley was 6 months old, the family got fantastic news: Her new stem cells, donated by Alissa, had done their job. She had a working immune system. “It was just incredible,” Alissa says. “She could finally live like a normal kid.”

After overcoming some life-threatening setbacks—all expertly dealt with by her UCSF team—Riley, now 6, has grown into a wise-beyond-her-years social butterfly with a special appreciation for getting to play with friends and scarf down burgers like any other first grader.

And, with Riley’s health stable, Alissa is giving back in a way honors her family’s own hospital experience.

When Riley was in the intensive care unit, a photographer friend stopped by and did an impromptu photo shoot. “My memories of that time are so fuzzy, but those photos show me that there were actually beautiful moments,” Alissa says.

Alissa, also a professional photographer, has made it her mission to capture these same moments for other parents. Through her nonprofit organization The Mark Makers, Alissa takes photos of families in the hospital at no cost to them. In the past two years, she’s seen it all: from parents getting the glorious news that their child is cured to an infant drawing his last breaths.

“It’s heartbreaking, but to give somebody that—to let them see their love—is a gift. I know that will be a tool for their healing,” she says. “And in turn, that heals me.”

She also finds another source of strength: Riley. “This girl can handle anything, because she’s been doing this literally her whole life,” Alissa says. “Any resilience I have comes from her.”