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At 11 years old, Grace Rose Bauer is tall for her age, surprisingly articulate, and strikingly statuesque in the way she carries herself. The faint freckles that pepper her cheekbones are almost the same color as the light brown in her eyes. She wears a coral and cobalt blue halter dress that she designed herself, her brown hair with golden highlights wrapped behind her.

Although she appears at first glance to be just like every other girl her age, the rising sixth-grader is surprisingly different in several ways: for one, she has been known to describe herself as “I live in New Orleans, but I go to school in Los Angeles;” for another, she’s a successful business owner and entrepreneur; and though it’s not noticeable upon casual observance, she suffers from Cystic Fibrosis, a chronic, genetic, life-threatening disease that impacts her daily life.

“It’s a nightmare,” Grace Rose says, describing her struggles with managing her disease. “It’s a lot to remember. I have to take a lot of pills. I don’t like having to do my treatments twice a day, they take 45 minutes and I have to sit in one spot. I lose a lot of playtime.”

Born in New Orleans, Grace Rose was diagnosed with Cystic Fibrosis at 2 weeks old in the NIC-U at Children’s Hospital. Her mother, Leah Milana Bauer, a self-employed clothing designer, launched her first fashion show to help raise money for the Cystic Fibrosis Foundation when Grace Rose was just a baby. Now in its 11^th year, the annual event has grown exponentially, and this year, evolved into a showcase for Grace Rose to present her own designs: the Rosie G Collection, “clothes made for kids by a kid with the intent of finding a cure for Cystic Fibrosis.”

This year’s fashion show, held in July at the Martine Chaisson Gallery, raised approximately $10,000, all of which was donated to the Louisiana Chapter of The Cystic Fibrosis Foundation.

According to her mother, Grace Rose is very particular not only with colors but with the feel, weight and content of the fabrics she chooses. The duo wash and test fabrics at home before Grace Rose turns them into a design.

“I’ll get an inspiration, and then I’ll take that inspiration and turn it into my own,” Grace Rose explains. “Then I’ll show it to my mom and she’ll say, ‘Oh, that’s really nice, maybe we can make a sample.’ And then we go to the fabric shop and then take everything to the samplemaker.”

“The comment she gets most often from every kid who purchases is ‘It’s so soft and comfortable!’” Leah says.

Katrina displaced Grace Rose and her mother; they headed toward Los Angeles to be near family.

“We needed electricity for her medical equipment,” Leah explains. “But then her doctors didn’t return for ten months, so I got stuck there (in L.A.) medically.”

Leah obtained California residency in order to get Grace Rose quickly back under the care of specialists. Although they continue to live in L.A., they return every year for the annual fashion show to support the Louisiana chapter of the Cystic Fibrosis Foundation and to visit supportive friends and family still in the area.

As a single mom, Leah says she has to be loud about Grace Rose’s care, which is what drives her to raise money for the Cystic Fibrosis Foundation, she explains,

“They have come so far in such a short time,” Leah says of the research. “Now, because of these advancements, these CFers are becoming young adults.”

Leah explains that it isn’t just the three hours of treatment per day, it’s the “tune-ups” that can take two to four weeks every one to four months that puts a strain on a young adult’s ability to work.

“Moving into the workforce has become challenging for medical reasons,” Leah says, “so I figured, why not just set her up with a business now?”

“Did you take your pill?” she interrupts to ask Grace Rose. Her daughter nods.

Leah says the Cystic Fibrosis Foundation has completed clinical trials of new equipment that could greatly enhance Grace Rose’s quality of life.

“It’s a vest,” she explains. “It’s not FDA approved — yet.”

The vest would allow Grace Rose and others with the life threatening disease to receive treatment without being confined for two-to-three hours per day.

“Right now, I’ll play with my dolls or I’ll have to sit in the toy corner,” Grace Rose explains, “and it’s hard to schedule a sleepover on the spot or a long birthday party because I need to do my treatments.”

The portable treatment vest would allow Grace Rose the flexibility of managing her medical care with considerably more flexibility. On weekday mornings, for example, instead of waking early for treatment, she could be receiving her treatment in the car on the way to school.

“She’s my gift of life,” Leah says. “That’s why I’ve let this take over, because it’s doing everything I want to be doing. I’m still raising awareness for Cystic Fibrosis, I’m still designing clothes, I’m still collaborating with like-minded people in the industry, and I’m creating a future for Grace Rose.”

As for Grace Rose, her goal is to expand her business into a brick and mortar operation.

“I want my own store, not just a website,” she says. “I want to work at it on the weekends.”

The spring and summer 2014 collection is available on the Rosie G website, www.rosiegstyle.com.

Originally published in The New Orleans Advocate, September 11, 2014.