On Saturday, May 30, XCEL Fitness invited CrossFit enthusiasts to compete in the First Annual 65 Roses event, to help find a cure for Cystic Fibrosis. 65 Roses was inspired by 6-year-old Drae Robles, a regular of the XCEL Fitness Kids’ Club, who struggles with the disease every day. The name, "65 Roses” was also inspired by Drae, chosen because that phrase is often used to teach kids how to say "Cystic Fibrosis.”
65 Roses is an annual, two-person team event that motivates participants to compete for prizes. 21 C2X teams of two competed in Olympic Weightlifting, a Sprint Triathlon, and a CrossFit Metcon, which consisted of completing six CrossFit exercises 65 times each. Each XCEL Fitness C2X team paid a fee to participate in our local 65 Roses event, and all proceeds went to the CF Foundation to benefit those afflicted with Cystic Fibrosis.
Drae was diagnosed with Cystic Fibrosis (CF) at four weeks old. Her parents fed her every two hours, and yet she would still cry and lose weight. She dangerously dropped below her birth weight. After tests, she was diagnosed with CF. Her father, Daniel Robles, said, "I’ll never forget the doctor’s eyes tear up as she told us Drae had CF. To have a doctor or medical professional tear up, I knew it was serious.”
She was practically starving, because she was lacking natural enzymes her body doesn’t produce. In order to balance this, Drae and other CF patients take pancreatic enzymes before every meal and snack. Along with medicines and vitamins, she has been taking about 30 pills every day since she was diagnosed.
Drae also endures more than two hours of breathing treatments daily, or more if the air quality is poor, or if she is feeling sick. Breathing treatments consist strapping to a vest to her, which has hoses connected to a machine that shakes and vibrates her body at different speeds and frequencies. Essentially, this vest loosens up the mucus that clogs her lungs and makes it difficult to breathe. Drae really struggles with treatment. Now that she’s six years old, she is beginning to recognize that this isn’t a normal thing for kids. She sees that her friends and cousins don’t do treatment, that mom and dad don’t do treatment. It really takes a toll on her, and often she cries and wishes she didn’t have "65 Roses.”
CF is a genetic disease that affects both the lung and digestive system. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines and bronchi, which often results in respiratory infection. It’s not uncommon for people with CF to have a double lung transplant in their 20s.
There is currently no cure for CF, and the average life expectancy is only 36 years old. CF is so rare that it affects only 30,000 people in the US (mostly kids, due to life expectancy and progressive lung failure) and 70,000 worldwide. Because the disease is so rare, the US government won’t fund research for a cure, leaving the CF Foundation to depend almost entirely on donations. The CF Foundation puts 90 cents for every dollar towards research, which far exceeds many nonprofits.
For more opportunities to show your support for the fight against Cystic Fibrosis, there are several CF charity events coming to Utah in the next few months, including the annual "Cycle for Life” bike race on September 19, as well as the formal dining event "Taste of Utah” on November 21.
You can also donate to the CF Foundation online at:https://www.cff.org/GetInvolved/ManyWaysToGive/Donate/index.cfm