Pennies by the Inch began as a program that encouraged kids to give to kids, collecting and donating pennies for every inch they were old on their birthday.

Today, the Pennies by the Inch campaign has expanded. Community groups, businesses, schools, congregations, and individuals can start their own personal fundraisers, collect donations door-to-door, host lemonade stands, auctions, and engage in other creative ways to support the hospital.

All we raise supports the area of greatest need at Primary Children’s – supporting Child Life, Expressive Therapies, the School Zone, and other key programs that are philanthropy-funded.

Kylee lives an active, involved, life between cheerleading, playing soccer, and being on the student council.

One weekend in June of 2022, Kylee started noticing she had some sensitivity to light, which progressed from needing to wear dark sunglasses on a Saturday to experiencing major pain in her right eye by Monday. After seeing her family’s eye doctor, he directed Kylee straight to the Intermountain Primary Children’s Hospital emergency room where she stayed overnight and went through a spinal tap, CT scans, MRI scans, and plenty of additional testing to determine what was going on.

After testing, Kylee was diagnosed with Myelin Oligodendrocyte Glycoprotein (MOGAD), a rare disorder that’s becoming more common but has an unknown source. The autoimmune disorder causes the body’s immune system to attack its own tissues and a fatty substance called myelin. Myelin coats and protects nerve fibers in the optic nerve, brain and spinal cord, leaving those nerve fibers at risk. In Kylee’s case, her central nervous system is at risk. Without much information about this disorder available, doctors at Primary Children’s do what they can to protect Kylee's body even while clear symptoms aren't present.

For treatment, Kylee needs to miss school to have 4-5 hour infusion appointments at the hospital, during which she often paints her nails, watches hair video tutorials, and takes advantage of Child Life programs that can distract from an otherwise difficult treatment plan.

Because Kylee's family lives in American Fork, Utah, she receives treatment at the newly opened Intermountain Primary Children’s Hospital Miller Family Campus in Lehi. In fact, Kylee was one of the first three patients to receive care at the new campus! Though Kylee’s doctors and her family are still trying to learn more about her diagnosis and the way her body presents it, Kylee continues to participate in the activities that make her happy day to day.

Kylee's a twin, loves to spend time with her dog, Levi, and her favorite movie is The Sandlot. She's also been a leader for her school’s HOPE Squad, where she acted as a resource for other students struggling with mental health. She would often write sweet notes of affirmation for her classmates and takes the time to listen to what others are going through. She hopes her story can help encourage empathy in others and show that kindness goes a long way when you don’t know what others may be going through.

By participating in Pennies by the Inch, you are directly supporting kids like Kylee, by funding Child Life programming and contributing to research to better understand complex diagnoses. The Miller Family Campus, which now benefits so many patients in Utah County, was made possible by community members like you through Primary Promise.