BAILEY'S BATTLE

A Barrington family fights to raise awareness of Marfan syndrome.

Standing just under six feet tall, 14-year-old Bailey Milburn has the lean frame and long limbs of a fashion model. But ask and she’ll tell you she’d much rather sew stuffed animals, read dystopian fantasy novels, or hang out at the mall with friends than walk a runway. “And on Thursdays I’m with Barrington High School’s Soul Buddies Animal Therapy Club,” she says, “because I really love animals.”

Just a few months ago, Bailey couldn’t do any of those things. She was recovering from the Park procedure—surgery that placed metal bars inside her chest to protect her heart. It was just one complication of Marfan syndrome; a genetic connective tissue disorder Bailey has lived with since birth. “Due to weak tissues in Bailey’s chest, her sternum had caved in and was squishing her heart and lungs so much her right ventricle was double the size of her left,” says Bailey’s mom, Jess Milburn, co-owner of Chicago’s North & Madison interior design firm.

Affecting roughly 1 in 5,000 people, Marfan can go undiagnosed for years—often until it’s too late. “Many die from its heart complications without even knowing they had it,” says Jess. “It’s crazy to me how under the radar it still is.”

The condition is often marked by tall stature, long arms, fingers, and toes, nearsightedness, and loose joints—but those signs are easy to dismiss. “They don’t test for it before birth, and even afterward, doctors often miss it,” Jess explains. “We sure did.”

At birth, Bailey was off the charts for length, with unusually long fingers and toes. But since her dad is tall, the family didn’t think much of it. Over time, other Marfan symptoms emerged—but it wasn’t until Jess picked up The Husband’s Secret by author Liane Moriarty that she had a breakthrough.

“I was at a store right before a flight and saw the book standing alone on display like some sign from the universe,” Jess recalls. “So, I bought it. Near the end, a character is described with Marfan syndrome—and it was like reading about Bailey. I couldn’t shake it.”

But despite Jess’s suspicions, getting a diagnosis for Bailey wasn’t easy. “Our pediatrician and geneticist were hesitant. I really had to push for testing,” Jess recalls. Finally, on New Year’s Eve 2019, when Bailey was 9, the results confirmed it: she had Marfan.

Since then, the Milburns have dedicated themselves to spreading awareness. Discovering there were no local Marfan fundraisers, they launched the HeartWorks Chicago Gala, now in its fifth year. Jess also serves on the board of the Marfan Foundation.

“Awareness is everything,” she says. “Marfan affects so many systems—eyes, spine, joints, heart—but symptoms often show up separately. Doctors may treat nearsightedness or scoliosis without realizing there’s an underlying condition.”

The most dangerous complication is aortic rupture—especially for undiagnosed athletes who appear fit but are at risk of sudden death. Sadly, Olympic volleyball player Flo Hyman passed this way, as did University of Maryland basketball star Chris Patton.

Fortunately, Bailey has a strong medical team and hasn’t faced the most severe effects. But the fight isn’t over.

“It’s hard watching Bailey and others with Marfan suffer,” Jess says. “That’s why we stay involved—to raise funds, share stories, and hopefully save lives.”

As for Bailey? “I kind of just take things day by day and deal with whatever comes,” she says. “I really love that my mom cares so much about what I’m going through with this, and that she’s trying to help others who have this. In my perfect world, I really hope that people with Marfan can make peace with it, stay positive, and not let it control them. We are so much more than this condition.”