GFPD Patient Ambassador Jayla Morrison and Mother, Courtney, Advocate in Colorado for Peroxisomal Disorders Awareness

Becoming a teenager is a big milestone for any young American, but Jayla Morrison’s 13th birthday celebration at her home in Colorado Springs last June was extra special. “It was a big party,” said her mother, Courtney Morrison. “We never thought she was going to make it.” 

Jayla has peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), a rare, genetic disorder that affects all major systems of the body and is usually terminal in childhood. When she was born, Courtney recalled, Jayla was very small, not eating well, placed on oxygen, and failed her newborn hearing test. Referred to a neurologist, Jayla was soon diagnosed with PBD-ZSD. Unlike children with milder PBD-ZSD whose symptoms may appear years later, Jayla received an early diagnosis, which Courtney said prepared her to what was to come. Besides her hearing and vision loss, and even after several surgeries over the years, Jayla has never been able to walk, is still in diapers, and can only eat through a feeding tube.  

While Jayla’s grandmother helped at first, Courtney became her full-time caregiver after graduating from college when Jayla was 2. “It is like having a baby that never grows,” she said.  Jayla requires 24/7 care and regular visits with her medical team, which includes a pediatrician, neurologist, endocrinologist, and rehabilitation doctor, among others. Being a full-time caregiver also means making sure Jayla is comfortable and has the best possible quality of life.  She’s happy, beautiful, and very popular at her school, the Colorado School for the Deaf and the Blind, Courtney said. Not long ago, Courtney recalled, Jayla was late and one of her classmates didn’t want to enter the classroom until she arrived.  

In 2022, at Courtney’s request, Colorado Governor Jared Polis issued a proclamation declaring October 5, 2022, as Peroxisomal Disorders Awareness Day in the state of Colorado. Working with the Global Foundation for Peroxisomal Disorders (GFPD), Courtney hopes the proclamation will help raise awareness about the impact of peroxisomal disorders and promote research into the cures and treatments patients need.