SOMER LOVE
Cystic Fibrosis
By Morgan Olsen | Photography by Rebecca Kay
AT 11-MONTHS-OLD, SOMER LOVE WAS DIAGNOSED WITH CYSTIC FIBROSIS — an incurable disease that didn’t offer a life expectancy past the age of ten. Rather than succumb to the fight, Somer’s parents decided it was time for them to hit the ground running and fight for a cure for Cystic Fibrosis (CF).
“I was told by doctors that I probably wouldn’t live to see my tenth birthday, but I just turned 47,” said Love. “You can either rise up and overcome or you do nothing and allow your challenge to conquer you. I joined my parents in the fight when I was old enough to do so, and I fight every day for myself and for everyone around me.”
As a child, Love’s life was very normal. CF is an invisible disease, and she often didn’t want people around her to know she even had it.
“I didn’t want people to know I had CF because I didn’t want to be treated differently,” Love explained. “I just wanted to live life. I love living life in the present moment and being present and taking one day at a time. I’ve jam-packed as much life as I can into these 47 years and that’s just been my philosophy with life.”
Love’s first nebulized daily medication wasn’t available until she was in eighth grade, but advancements in medical technology have continued to provide improvements for those diagnosed with CF today.
“Kids that are born today will never know CF like I’ve known it, which is amazing,” said Love. “The goal for me is to find a cure for CF in my lifetime. The median age of survival for kids born today is 63 years old; when I was diagnosed it was 10 years old. Things are moving in the right direction, but we’re still not done with the fight.”
Despite her diagnosis, Love lives in the moment and cherishes every milestone she gets to experience. She shares her story so others don’t feel so alone in their journey, and by talking about her experiences, she hopes that others diagnosed with CF will experience hope that they can still live a full life.
“Gratitude grounds me,” she said. “I’m so grateful for every moment and every breath. I like to keep my hopes high and dreams big. I am a huge believer in sharing my story with the hope that it might help someone else.”
Love’s story has reached many through her blog and social media platform titled Love to Breathe. One story, specifically, taught Love the importance of sharing her story and spreading hope to those who follow her.
“When I turned 30, my dad put me on a billboard and it led people to my blog and website,” Love recalls. “One couple was driving, saw the blog, and started following my journey. Years later, they reached out and told me they just had a baby who was diagnosed with CF. It provided this new mom so much hope to know that her child can live a full life. Hope is a powerful tool. When you can provide that to anybody, that's an amazing opportunity.”
Having a support system has also been an important part of Love’s journey.
“When you’re fighting any battle, no matter the size, support is key and I have the most amazing support system. I credit so much to my parents. They fought hard and did a really amazing job.”
When Love was diagnosed, her parents wanted to do something to help raise awareness about CF in order to find a cure and further research surrounding the disease. As a result, they started Utah’s Chapter of the Cystic Fibrosis Foundation, and in 1998, started a fundraiser called Taste of Utah.
“Taste of Utah is an event held at the Grand America every year,” Love said. “Restaurants come from all over Utah and bring a tasting of what they’re known for. Guests grab a plate and are able to taste some of the best food in Utah, all in one place. There’s a live silent auction, a bid for a cure, and a speaker. It’s a great night for people to come together and have fun, and all money raised goes to funding CF research. This year’s event is on November 21.”
While Love remains in positive spirits, she says the daily behind-the-scenes of living with CF is something that is difficult and rarely talked about.
“A typical day, when you have CF, consists of hours of breathing treatments, airway clearance, exercise, handfuls of pills, sterilizing neb cups, and a healthy diet — and this is all just the regular maintenance for when we are healthy,” she said. “We work so hard day in and day out.”
To anyone living with CF, Love encourages you to share your story and keep fighting because there is power in awareness.
“The reality of CF has taught me to live my life in the moment,” said Love. “Don’t give up. Don’t give up hope. Don’t give up on yourself. Keep pushing forward.”