“The number is significant,” Susan Ellis said. “Young children who have a difficult time pronouncing cystic fibrosis are taught to call their disease ‘sixty-five roses.’ ”
Many celebrities say they have been inspired by Nicole, whom they watched blossom from the adorable blond child who melted hearts at the early Redbone tournaments into a worldly young woman.
Some now host Redbone at-large tournaments, including former University of Miami and Denver Broncos lineman Mark Cooper (the Rocky Mountain Fly in Aspen, Colo.) and baseball Hall of Famer Wade Boggs (Crocodile Bay OSA Classic in Costa Rica). “We continue to carry the torch and fight for Nicole and everybody else,” Boggs said.
Under the Redbone banner, there are now 29 fishing tournaments in 11 states and four countries. Over the years, Army Gen. Norman Schwarzkopf, supermodel Lauren Hutton, late saxophonist Clarence Clemons, retired astronaut Bruce Melnick and NFL Hall of Famer Ted “the Mad Stork” Hendricks also fished the tournaments, which have raised more than $16 million for the Cystic Fibrosis Foundation.
“We hoped there would be a cure by now, but we won’t stop until there is one,” Susan Ellis said.
Take one look at Nicole today, a vivacious five-foot-two, 113-pound woman, and it’s impossible to imagine that her life has always been a daily struggle filled with long breathing treatments, zillions of pills for her digestive problems and physical therapy called “clapping” that requires pounding on her chest to break up the mucus buildup.
Now there are vibrating vests that replace the clapping. But it’s still an ordeal. Nicole needs to wear the vest for 30 to 45 minutes at least twice a day. She still has to do breathing treatments and take a regiment of pills.
At the recent 25th Redbone kickoff dinner, she was the guest speaker. She talked about a life that has included world travel, earning a master’s degree in business and working for the global frozen food empire Rich Products. She manages business development and marketing of the company’s brands in parts of South and Central America and the Caribbean. Her fluent Spanish, burnished during a college semester abroad in Spain, has come in handy.
“If her speech didn’t move you, nothing will,” said Johnson.
Johnson’s wife Susan agreed: “Davey and I both have lost kids, and we were floored to tears over her spirit. If it was me, I’d go to Costa Rica and sit on a beach and smoke pot. But she’s not doing that. She’s furthering her education and looking forward to her future.”
The efforts of the Ellises and the Cystic Fibrosis Foundation have been paying off slowly but surely. Medical advances have extended life expectancy for those with the disease to age 37.
Just this year, a “kind of miracle drug” called Kalydeco was approved by the FDA. It’s a breakthrough, the first drug to deal with the underlying causes of the disease and restore function of the protein the defective gene targets. While the drug helps people with only one particular mutation (about 4 percent of the CF population), scientists are excited that it can be adapted for other mutations.
“I’m confident we’re on the 20-yard line and it’s just a matter of time and money before we can manage the disease for the 100 percent, so people can live with CF and no longer die from it,” said Christina Landshut, executive director of the South Florida office of the Cystic Fibrosis Foundation for 27 years.
“But I look at Nicole, and I know the clock is ticking,” said Landshut, who has known the Ellis family for more than 25 years. “I look forward to the day we can celebrate the end of the disease with them. It’s scary to live with it.”
Nicole said she always has had hope: “I’ve never been left in the dark without any new drug or new therapy to try. But at the same time, my lung functioning still trends down.”
She recently spent 19 days in the hospital. She tried to keep up with her work, putting a do-not-disturb sign on her door when she was on Skype for a conference call with co-workers in South America.
“I have good days and bad days,” she said. “Some days, I think: ‘Whoa, why did I get my MBA if I have to go part time or cut back?’ But other times I see progress, with a new therapy coming out, and I think it will be in time for me to have my career and a family some day. I’m just at the mercy of how quickly the cure comes.”