This year, we are showcasing Elana and Lily Royer, a mother-daughter creative team whose whimsical collages are earning a loyal following. Their Lilybart greeting cards bring joyful creativity into Lily’s lifelong fight with Cystic Fibrosis, while raising awareness and funds for alternative care. Each piece of art begins at their dining room table in Aspen with a stack of recycled magazines and two pairs of scissors. Yet the beginning goes back to the Royer Family’s early days of deciding to live fully while living with a chronic disease.
We asked Lily and Elana to tell us about their journey, from Lily’s early diagnosis to the eventual launch of their now thriving nationwide business.
Just before my first birthday, I was diagnosed with Cystic Fibrosis.
My parents say I learned how to walk by pushing my I.V. pole up and down the hall of the Columbia University pulmonary ward in New York City. They became quick experts on keeping me healthy, sterilizing equipment, administering inhaled steroids and other medications. Three times a day, they held me upside down, as my doctors had shown them, firmly patting my chest and back to clear my lungs.
An early memory, age three: a large blue vest arrived. It hooked to a machine with tubes and wires, designed to provide better chest vibration than my parents could do with manual therapies. But I was scared of the machine, so my big sister Avery wore it first to show me how it worked. Our cat Maxwell understood, and so if he heard the sound of the machine, he came running and sat on my lap while I did my therapy.
My brother Kip was born when I was two years old, and before long people assumed we were twins. This wasn’t just because he quickly surpassed my size, but also because we always seemed to especially understand one another. He intuitively knew what I needed, a water or a blanket, and he always knew how to make me laugh. Then came our youngest brother William, forever ready for adventure.
In 2009, my parents moved our family from New Jersey to my grandmother Judy Royer’s ranch in Old Snowmass. (We later moved to Aspen.) My parents hoped that the clean air and active mountain lifestyle would give me an advantage over my CF. They were right. Being active is part of the CF wellness protocol. Here I spend most of my free time outdoors – skiing, horseback riding, water skiing, surfing, boxing, playing lacrosse and field hockey. Exercise allows air to move deeply down into the bronchioles of my lungs which are scarred and clogged from years battling CF.
Salt water helps break down mucus. It restores balance and acts as a natural lubricant, allowing the lining of the lungs, bronchus and bronchioles to stay moist. So my parents take us to Shelter Island for the summer.
“We’ll find a way to do it!” is what my father Chris Royer is quick to say.
For example, we take a quasi-annual hut trip on the backside of Ajax, to the 10th Mountain Barnard Hut, which has no electricity. I can’t skip the pulmonary vest, even for half a day, so a family friend picks me up on his snowmobile twice a day, and drives me to the Sundeck so I can plug in my vest.
My parents were equally insistent that I travel with the family through Europe and on to Sardinia when my sister Avery finished her Rotary exchange year. So they found ways to bring my vest and medicines (which needed to be on ice) on airplanes, trains, cars and a ferry. I have camped on the beaches of Costa Rica and San Diego where I learned to surf with my AHS Ex Ed classmates. And I was given a ‘Make-A-Wish’ trip, where I sailed around the Nā Pali coast in Kauai. I now have a portable pulmonary vest with a battery pack which allows me to have a lot more freedom of movement.
I have been given many opportunities to know that I can be more than CF, more than my genetic makeup. I fight each day to breathe, to grow and to beat the odds. In a way, the work I do every day to live a healthy life makes my friendships and my possibilities for the future more rewarding. My company, Lilybart, has given me an opportunity to develop organizational skills and solve problems. I also get to connect with amazing people who ask about my disease, which isn’t what I usually talk about. I’m just like every high school senior who dreams of the future and works hard to get there – I’m looking forward to what’s next.
When Lily was a baby, something was wrong. She had a powerful personality, fearless and steadfast. However, she was small, weak, always coughing and getting ear infections. She couldn’t gain weight – despite voraciously nursing.
We saw ENTs, specialists, alternative practitioners, and no one had answers. Then at an appointment, I mentioned something – Lily’s skin seemed salty. We all have salt in our sweat, but when I kissed my baby, I literally tasted salt. This clicked for our doctor. Salty skin is an indicator of Cystic Fibrosis, related to chronic malabsorption. The doctor called for blood work and my husband Chris and I soon learned that Lily received a genetic mutation for CF from both of us, meaning that we are both carriers of the disease.
I was at work in New York City when the doctor called with the results and told me that CF is a life-shortening illness. The average age of survival then was 32. (Today it is 38.) I cried all the way to Penn Station, then I cried on the train all the way home to New Jersey. Then it sank in – not knowing was far scarier. By naming it and understanding it, we could treat it. Chris and I devoured every bit of information they gave us and learned how to administer Lily’s medicines and therapies. Within a month, she started to thrive. We watched with joy as her tiny body started to match her strong personality.
It has never been easy. Treating CF takes over the rhythms of a household because mornings and evenings are punctuated with treatments – sterilizing inhalers, taking medicines. Lily needs lots of pills, enzymes, antibiotics, and steroids, with chest vibration twice a day, and more frequently if Lily gets sick. She now handles all of her treatments, starting every morning at 6:30 a.m.
We decided early in this journey that CF would not take over our lives. When you’re facing a life-threatening disease, you can feel like you’re living in a small box. We decided that our family would live life like it’s a large box filled to the top.
Whenever Lily gets sick, she can go quickly downhill. A cough can become pneumonia overnight. One of the hardest times came when she was fourteen. Her lung collapsed.
Her doctors called for a ‘Flight for Life’ to The Children’s Hospital in Denver. We chose the three-hour drive so we could prepare for an onslaught of tests, procedures and the possibility of surgery. Lily packed quickly, assuring her brothers with her characteristic wit that she would be back home before they could snoop through her room. Bundled in a blanket with a pillow clutched in her arms, she stared out the car window, pensive and quiet. Her breathing was shallow and tight. We drove through Glenwood Canyon with sleet, frost and heavy hearts.
Upon arriving at Children’s, the reality and severity of Lily’s condition hit home. Examinations, X-rays and CT scans showed a significant collapse of Lily’s lower right lobe. She needed oxygen and a PICC IV. She needed surgery: a thoracoscopy, in which a tube was inserted in Lily’s trachea. It connected to a ventilator and assisted with every inhale and exhale.
“There is no day or night in a hospital,” Lily observed during her two weeks of fluorescent lighting and around-the-clock visits from doctors, therapists and specialists.
Then a special card arrived. A bold, whimsical painting emerged from a crisp white envelope. It brightened the hospital room. Lily’s youngest brother William had sent a beautiful card hoping it would make Lily smile. Candy-apple reds, bold pinks and soda-pop purples in crazy heart patterns screamed, “I love you.” We smiled, reading William’s distinctive cursive and his lengthy account of happenings at the ranch.
The nursing staff smiled too. In fact, everyone who entered the room noticed and commented on William’s card. We placed it next to Lily’s bed for the remainder of her stay. Nurses, doctors, pulmonary specialists and visitors commented about its color and patterns.
“It would make a great Valentine card,” many told us.
In that hospital room, amid the compulsory beeping machines that tracked Lily’s vitals, we started sketching logos. We decided to name our greeting card company Lilybart, a combination of Lily’s first and middle names, Lillian Bartholomew. Each card would tell Lily’s story, making CF real to more people.
We find our ideas all around us – the gondola, snow, and Rocky Mountain wildlife such as: bears, elk, buffalo, bighorn sheep, and coyotes. Our pets inspire us – over the years on the ranch, we had 5 dogs, 3 horses, 2 rabbits, chickens, ducks, goats and more than 20 rescued barn cats that we fostered for Aspen Animal shelter. We try to capture the spirit of these animals in our designs.
Each of our original images starts as a sketch. Then we sit down at our long, farmhouse dining table and rip apart magazines recycled from the library. We sort pages into piles of yellows, pinks, greens, blues, browns, and reds. Then we start clipping. We piece bits together, moving parts around, looking for the gesture that will give it life. Then we start gluing, adding whiskers, eyes and whimsy.
Lily’s aunt, Susan Cruz is a graphic artist. She scans and Photoshops our creations, creates card designs with text, and turns each idea into a print-ready file, which is then passed to Lily’s father Chris, whose printing house produces and packages them. It’s a family business in the truest sense.
Lily lives life with vigor. She will go to CU Boulder next year, and this means that our collaboration will grow as she grows. Her new experiences – moving away from home, striving with college classes, attending social functions, football games – I’m sure all of this will show up in our product line. Lilybart cards will evolve to reflect all of Lily’s milestones – a career, a wedding, possible children of her own (we mothers all wish for the same things, don’t we?) We’ll meet what life brings us at our dining table with paper, scissors and hope.