Carly Lindmeier sits on the patio of her father’s house in Orange. The 20-year-old is finishing up wooden monograms she’s about to ship out to her customers.
She takes a long glance at a monogram of the letter H, decorated in delicate, miniature paper purple roses.
“Emily … ,” she says.
Lindmeier was 12 when she met Emily Haager. Although there was a 12-year age difference between the two, Lindmeier loved her like a sister. Haager acted as Lindmeier’s mentor.
But Lindmeier never had an opportunity to physically spend time with Haager. People with cystic fibrosis are strongly urged never to meet face to face, to avoid cross-infection.
“It’s frustrating, but it’s just the way it is,” Lindmeier says.
Haager died in 2010 at age 27 due to complications caused by the disease. The H monogram is dedicated to her memory. Lindmeier made it by hand as part of her home decor business selling wooden monograms to raise money for research into a cure for cystic fibrosis.
‘Breathe through a straw’
At first glance, you wouldn’t think Lindmeier has a chronic illness.
Like so many 20-year-olds living in Southern California, she loves hanging out at the beach, binge-watching Netflix and eating Chipotle. After attending Santiago Canyon College for two years, she transferred to Syracuse University and starts there next week. She plans to become a speech pathologist and live in New York City after graduation.
But after spending some time with Lindmeier, you’ll notice that her voice is slightly raspy and that she carries an iPod-like device attached to her waist.
“It’s my insulin pump. I used to get insulin shots, but it’s a lot easier to just use the pump,” she says. “I developed diabetes from my cystic fibrosis.”
Cystic fibrosis is a genetic disorder that damages the lungs and digestive system. The disease causes thick, sticky mucus to form in the lungs, pancreas and other organs, which the body has difficulty breaking down. This means lung damage, breathing difficulties and improper digestion.
The disease can also bring additional complications. For example, it can damage the pancreas, which affects its ability to produce insulin, which can result in diabetes.
“Imagine having to breathe through a straw,” Lindmeier says. “That’s what it feels like to have cystic fibrosis.”
The reality is that while this might be the most exciting time in her life, it could also be the most nerve-wracking. Symptoms become progressively worse. Death in childhood or early adulthood is common. The average life expectancy of a person living with cystic fibrosis is 37.
“When I turned 20, it was kind of tough to realize that I was already middle-aged,” Lindmeier says. “Five years from now, it’ll probably be worse.”
65 Wooden Roses
Lindmeier was looking for a way to raise awareness about cystic fibrosis. Coming from a family of entrepreneurs, she determined the best way to do that was through starting a business. After seeing the proliferation of handcrafted products online, she knew there had to be a story behind her business.
She came up with the idea of selling a variety of decorated, wooden monograms, each dedicated to a fallen cystic fibrosis patient. She named the business 65 Wooden Roses.
Each monogram is hand-made and starts at $24.99, with 20 percent of proceeds going to the Cystic Fibrosis Foundation. Lindmeier sells the monograms online at 65woodenroses.com. While Lindmeier has only operated the business since the beginning of July, it already has generated national attention. It was featured in a silent auction at Pipeline to a Cure, the Cystic Fibrosis Foundation’s annual fundraising gala.
Hope through Orkambi
As she draws attention to the disease, Lindmeier has a positive outlook on her own illness. In July a new two-drug treatment, Orkambi, won approval from the Food and Drug Administration. It is designed to counteract the genetic defect that causes the disease, which effectively controls symptoms. This could potentially extend a patient’s life by decades.
There are more than 1,800 mutations of the cystic fibrosis gene. The twice-daily treatment only works with one mutation, the most common, called delta-F508. Lindmeier has the delta-F508 mutation and plans to start taking Orkambi.
But Orkambi is not a cure, and the treatment comes with a hefty price tag. A year’s worth of the Orkambi is $259,000, according to drug company Vertex Pharmaceuticals. Lindmeier’s insurance plan covers the drug, but her co-pay would be $6,000 annually.
For her, it’s a small price to pay for an improved quality of life. Especially since she’s not going to let cystic fibrosis hold her back.
“I could just mope around all day and be sad that I have cystic fibrosis, or I could do something to make my life worth living and be happy,” she says. “Happiness really is a choice. I choose to be happy.”
Contact the writer: jomoreno@ocregister.com
