It’s never easy for sophomore Carly Lindmeier to make the trek to her classes. After surmounting just one hill, her lungs are already working hard, she’s out of breath, and on the bad days, she needs to stop and recover.

It may seem that Lindmeier is simply out-of-shape, but as a California-born surfer, she’s not. Her struggle is the result of Cystic Fibrosis, a genetic disease she was diagnosed with at just three months old.

Cystic Fibrosis affects primarily the lungs and digestive system. It causes the body to produce sticky, excessive mucus that clogs airways and is easily and often infected. According to the Cystic Fibrosis Foundation, around 30,000 people are living with CF in the United States, and the median lifespan is about 40 years. To cope, Lindmeier began 65 Wooden Roses last July, a company that sells decorative monograms to benefit the Cystic Fibrosis Foundation.

 

Upon coming to Syracuse as a communication sciences and disorders major, Lindmeier said the first few weeks were extremely difficult on her lungs. Although it’s gotten better, she still spends much of her day taking care of herself. CF maintenance includes pills, sinus rinses, breathing treatments and a vibrating vest to dislodge the mucus, among many other regimens.

“Every day is sort of a roller-coaster,” she said.

Lindmeier’s mother, Lori Lindmeier, said that even when Carly was little, she was able to manage many of her treatments on her own.

Despite the positive attitude she has now, Lindmeier said she spent much of high school in a dark place. Her lowest point came when she was 15 years old, when her friend Emily Haager died from CF at the age of 27.

Despite a 12-year age difference, the two were extremely close. They were both outgoing and they loved to surf.

When Haager died, Lindmeier said she sunk into a depression. Not only was Haager the first person to die from CF that Lindmeier knew, she was also her most significant mentor in life up until that point, Lindmeier said.

“It’s scary because I’ve seen a lot of people go from healthy to horrible in an instant, so I spent a lot of time just dwelling on that, and thinking, ‘What if I don’t have that much time?’” Lindmeier said.

 

This period of depression lasted through the end of high school, she said. However, a moment of closure did come soon after Haager died. Lindmeier was taking a career test for a class, where she attempted to sway her answers toward being a doctor.

Yet even with her biased answers, the first career that came up in her results was sign-language interpreter. This seemed like a sign, Lindmeier said, because that was Haager’s major in college.

After high school, Lindmeier spent two years at community college in her hometown of Orange, California. In January of this year, while creating decorative monograms for her grandparent’s birthdays, she realized she could turn this craft project into a business.

Lindmeier started to create more and more monograms, with each one taking 30 minutes for her to handcraft. The monograms are made from wooden letters and are covered with either a rustic burlap-and-paint design, or with a flowery base and either pink or purple flowers on top.

“She surprised me with the [business]. I had no idea that she was even doing it,” said Eric Lindmeier, Carly’s father. “And then one day there she was; she had put together a plan … I look at Google maps, and there’s our house, and it says ‘65 Wooden Roses’ on it.”

To further give back to the CF community, she decided to name every monogram design after friends of hers who have died from CF. Naturally, Emily Haager was honored with a design, as were her friends Heather, Alexandria and Kenna.

In the beginning, Lindmeier’s only customers were family, friends and acquaintances within the CF community. After a local newspaper did an article on her, however, Lindmeier said that orders from strangers began to come in.

“To see her up there just grabbing life by the horns and running with it, and then spreading the word so that people understand … it’s just very touching to me as her mom,” Lori Lindmeier said.

Her parents said that the move to Syracuse from California has been “so exciting” and that they are proud of her for always being concerned about others’ well being.

 

Jenn Paxton, a medic in the U.S. Air Force in Japan and one of Lindmeier’s customers, said the designs are a super cute and creative way to raise awareness for CF.

“I would just like to say how strong and selfless a person Carly is,” Paxton said. “I constantly see her supporting others who battle with CF and it just shows how caring she is.”

Twenty percent of Lindmeier’s proceeds go towards the Cystic Fibrosis Foundation to help research cures, such as a new drug called Orkambi that was approved by the FDA last July. Lindmeier has been using Orkambi for a few weeks now. Although it was difficult at first, she said, she feels better and is optimistic for her future.

“In high school I was just so obsessed with the numbers associated with CF. The median life expectancy for someone with CF is around 40 years old,” Lindmeier said. “I used to get so caught up with that, and caught up with people getting sick and people I know passing away. I never thought I would be here. I’m just really excited to be here.”

Published on November 2, 2015 at 10:24 pm

Contact: emmichae@syr.edu