For three young women, a shared diagnosis has led to a lifelong bond — and a passion for inspiring courage in others with their disease.On the road to Katmandu two years ago, Samantha Monson and her sister, Libby Pelican Seamans, knew they had a problem. It was late March in the Nepalese capital, and the women had run out of ideas for how to chill medication they desperately needed to treat their cystic fibrosis (CF) — the genetic disease that causes a life-threatening buildup of thickened mucus and weakens vital organs such as the lungs and the pancreas. Without the scores of pills and liquids they’d taken nearly every day of their lives, the 20-something pair would become more prone to respiratory infections that could devastate their bodies. The idea of emergency hospitalization nearly 8,000 miles from their homes in Denver was hardly appealing.
The women had traveled together frequently, and they’d always acclimated well, hanging IV bags from trees on hikes in Colorado, finding a nebulizer with a specialized plug in Spain. This time, though, their plans had fallen apart.
With the temperature in the city hitting 85 degrees, the sisters knew they were short on options. The Pulmozyme they’d stored in a cooled pouch was warming quickly, as was the Aztreonam that Sam was using as part of a clinical trial. Katmandu was experiencing rolling power outages, so store-bought ice was out of the question. So, too, was stocking up on break-to-activate ice packs; the women figured they’d need more than 50 if they were to survive their six-day walk along the Annapurna Circuit — among the world’s most impressive treks.
Their guide had an idea: He could find a refrigerated cooler that would plug into a wall outlet. It was an odd solution, the women thought, since the man would have to carry the cooler up to 10 miles each day, stopping only when their group found a place to stay for the night. Still, if he was up to it, so were they.
With some patience — and money — the guide had the contraption by nightfall, just in time for the sisters’ second of two CF treatments for the day. The next morning, the man strapped the cooler to his back and started up the trail without complaint. Libby and Sam exchanged nervous glances. Is this really going to work?
In a way, that was the question nearly everyone had been asking about them all their lives.
Thin, with shoulder- length brown hair and a warm smile, Sam lays out a series of photos on the coffee table inside her house in northwest Denver’s hip Highlands neighborhood. There’s Sam and Libby at the beach. There’s Sam and Libby smiling on a hospital bed. There’s Sam and Libby at a cystic fibrosis charity event.