by Sharon Lovering
Last spring, Miami resident Jose Tamayo set out on a 65-mile canoe trip to raise money to find a cure for cystic fibrosis. While not unusual in most respects, one thing set Tamayo apart from those who joined him for the journey: he's blind.
Tamayo lost his sight about 9 years ago to retinitis pigmentosa. He began paddling canoes as a hobby in college. He currently canoes a few times a year. This trip took him and his group from Fort Meade to Arcadia, Fla., a little over 65 miles over the course of five days.
Why paddle 65 miles? "I wanted to make this a parallel," Tamayo says. "Children with cystic fibrosis call it 65 Roses (R)." He notes that the kids find the words "65 Roses" easier to pronounce. His daughter Meli is one of them.
Cystic fibrosis is a condition that afflicts roughly 30,000 children and adults in the U.S. It is very prevalent among Caucasians. The basic defect is the inability of cells to process sodium. Mucus builds up in the lungs and elsewhere, and bacteria breed in the mucus. The defect doesn't allow the sodium to break down the mucus. When the lungs try to protect the body from the bacteria, they build fibrous scar tissue, and the person eventually loses the ability to breathe. Average life expectancy is 30 years, though some people do live longer; Tamayo knows a 58-year-old man who has cystic fibrosis.
Life expectancy has a lot to do with which genetic mutation you have, he adds. There are hundreds of variations of CF, and scientists are discovering new variations all the time. "Some tend to be rougher than others," he says. "There's new medication now that addresses the underlying issue, but that's for a specific mutation of CF." The gene mutation responsible for cystic fibrosis was discovered in 1999.
Meli, now 11, was diagnosed at the age of 3 months. She's "a good student, very smart, always happy," he said, a father's pride noticeable in his voice. "That's how we've been able to be positive about this kind of thing. She's very inquisitive, looking to learn and learn more. She often wonders 'Why me?' but she doesn't seem to be very upset about it. She knows what she has. We try to keep it as positive as possible and try to help her understand it, and she does."
Treating cystic fibrosis requires quite a bit of therapy, including a daily regimen with nebulizers and aerosols, and physical therapy to get rid of the mucus build-up. Instead of being a thin, slippery substance, the mucus of a person with CF is a thick, glue-like substance that builds up in the lungs and causes a lot of other complications.
On average, Tamayo noted, his daughter is only hospitalized once or twice a year because of the buildup, though she was recently diagnosed with diabetes due to CF. "CF is not good for anyone," he said. "She's a good kid. She has a lot of potential. She loves life – I know that. I fight to try to make things better for her, and for all the kids in this situation. I've been able to help my daughter, and I figured, if I'm paddling 65 miles for this cause, I can raise awareness and get people to see that what I'm doing is something good and it makes a statement. No matter who you are, you can do something if you really want to do it."
In April of this year, Tamayo and his team took on the Great Strides walk at Miami Lakes' Graham Park. The walk is the Cystic Fibrosis Foundation's fundraiser to help find a cure. Want to help? Visit https://www.cff.org/Great_Strides/MelisRoses2013.