In the Spotlight
Somer was diagnosed with cystic fibrosis, a life-shortening genetic disease, just before she turned a year old. Since then, she and her family have marked each birthday with a positive, uplifting theme.
“When I was diagnosed, doctors told my parents I wouldn’t live past my tenth birthday,” Somer says, “so birthdays have always been a huge deal.”
A Focus on Community
At 35, Somer has many reasons to feel like a champion.
She is a tenacious fighter against a complicated disease that has left her with less than 30 percent lung function. Thick, sticky mucus that builds up in Somer’s lungs has caused irreversible damage, but she refuses to let that keep her from shining.
Somer writes a blog, participates on a parent-advisory council at her local children’s hospital and meets with CF parents once a month to discuss life, the disease and strategies for staying healthy.
Somer says her job is staying healthy. But the six hours of CF treatments she completes daily don’t stop her from doing what she loves and serving as a role model for others.
“I always want to be positive. I think it’s important for younger kids and their parents to see an adult with CF who lives life to the fullest and makes every breath count,” Somer says. “My main messages are don’t give up, don’t get discouraged, and do your treatments. The more you stay at it, the healthier you will be.”
To show just how serious she is about following her treatment regimen, Somer started coaching younger people with CF through what she calls FTTT (FaceTime/Treatment Time). Using a webcam, she completes treatments with other, younger members of the CF community simultaneously via video.
“I think it’s good for kids with CF to see other people doing treatments. It gives them a sense of normalcy,” Somer says. “I try to coach them on what to do, like how to take deep breaths and get rid of mucus.”
Supporting the Search for a CureIn addition to helping the CF community, Somer and her family have played a major role in garnering support for the search for a cure in their home state of Utah. Her parents were instrumental in starting the Utah Chapter of the Cystic Fibrosis Foundation, and every year they hold a fundraiser to support the Foundation’s mission.
Called “Taste of Utah,” the event invites local restaurants to bring their signature dishes for guests to sample. Now in its 16th year, the fundraiser attracts nearly 1,000 CF supporters and last year raised more than $300,000 to help support the mission of the Foundation.
Somer makes it a point to thank guests and remind them why their dedication to the cause is so important.
“The Cystic Fibrosis Foundation is about adding tomorrows,” Somer says. “I tell our guests that people with CF will do great things with those tomorrows, but we just need the chance. Donations from friends and volunteers will help us get there.”
P.S. Love Notes
No conversation with Somer about her life would be complete without mention of her two beloved pugs, Lilly and Oscar. The dogs have their own room, complete with their own dog beds.
Somer says Oscar and Lilly’s antics keep her smiling, and that helps keep her healthy.
“I like pugs because we both have trouble breathing,” she says with a laugh. “They’re incredibly entertaining and funny — there’s never a dull moment with them.”