Gift-cards project lifts up Aspen area teen with cystic fibrosis
March 21, 2015
Lily Royer is like a lot of children her age in the Aspen area. She enjoys the mountains, skiing and horseback riding. But one thing sets Lily apart from peers — the 14-year-old student at Aspen Community School has been fighting cystic fibrosis her entire life.
"I spend an hour and a half doing treatments morning and night," she said. "It's my own responsibility, but it's gotten easier."
There isn't a cure yet for cystic fibrosis, a disorder to the lungs and such body organs as the liver, kidneys and pancreas. The average survival age is 38.
And it's a way of life for Lily.
“It’s something that helps me to take my mind off it.”Lily Royer
Just last June, Lily had an emergency appendectomy. And in October, a lung collapsed and she went to a Denver hospital.
Her two-week hospital stay also took a toll on her parents.
"Just watching my daughter go downhill so fast, we had to do something," her mother said.
To divert her daughter's attention from her ailment to something uplifting, her mom tooled around with some logos on the computer, hoping to capture Lily's persona. Lily's aunt, who's a graphic designer, put on the finishing touches.
Lily took to the idea and morphed the venture into making greeting cards, which inspired an eighth-grade fundraising project at the Community School for its class trip to San Francisco.
The greeting cards were wildly popular, prompting Lily and her family to extend the success into Lilybart, so-called after her full name — Lillian Bartholomew Royer. Lily has teamed up with local artists to create the cards, which are sold at number of area retailers and can be bought online at www.lilybart.com.
The ongoing project also renewed Lily's spirits, and the upbeat, cheerful girl has found it as a source of inspiration and personal therapy.
"It's something that helps me to take my mind off it," she said. "I like doing it and I hope it makes an impact throughout the valley."
Lily gets support from her older sister and two younger brothers, and her mother and father have played an instrumental role in getting her the help she needs.
Elana Royer said the parents learned Lily had cystic fibrosis in 2001, just before she turned 1.
The family moved to from New Jersey to Old Snowmass in 2009 for the "fresh air and skiing," Elana said.
Where they previously resided was crowded, Elena said, "So we decided to make the leap and come out and live at the ranch. We weighed what's good for the children."
Along with Western medicine, Royer has sought alternative healing methods such as acupuncture, massages and Chinese medicines.
Lily's medical treatments, Elana said, "Don't have to all be on one side."
Proceeds from the greeting cards will help fund Lily's non-Western treatment, Royer said.
"Lilybart is an endeavor we have started to raise awareness for CF and to provide access to Integrative Medical Support," reads a pamphlet for the cause. "A cure will be found; science has provided a path. The hard part is keeping these children whole and healthy to benefit from these life-giving discoveries."
Among the local artists Lily has collaborated with is Charles Andrade, whose works are in galleries in Aspen and Santa Fe, New Mexico. An accomplished teacher, Andrade earned his master's degree in fine art and art therapy at the Tobias School of Art & Therapy in England.
"Color is an amazing tool," Andrade said. "In my philosophy, color and the human soul are one entity that borders on esoteric. Many people who work with colors therapeutically have a balanced state of soul."
Helping defray of printing costs is Lily's father Chris, who runs a family printing business in New Jersey.
Some of the greeting cards' common themes are hearts, either filled with ski-area maps, old maps of Aspen or other images. Other subjects are Aspen leaves, snowflakes and a gondola bucket.
The heart series was created with Aspen sculptor and artist David Jungquist. Soon-to-be-released greeting cards will feature an acrylic painting of aspen trees, which Lily did with Andrade.
Lily's mother said their ultimate goal is to bring onboard other ailing youth to Lilybart.
"It's just the hope factor," Elana said. "It has been life-changing for Lily."