Seven-year-old Kylee is one of those children you’d call a spitfire—that is, until her youthful energy suddenly sputters out.
It’s then that her pink "Hello Kitty" backpack comes to the rescue. A permanent fixture on her shoulders, it carries a packet of nutrient rich milk and high-protein formula that feeds Kylee through a tube inserted directly into her small intestine.
From the moment she was born, Kylee had severe health problems. She had digestive issues, seizures, developmental delays, a lazy eyelid covering half her pupil, and an inability to sweat or regulate her body temperature. At age 4, after enduring a dozen surgeries and countless painful and invasive diagnostic tests, she was diagnosed with Mitochondrial Disease III and IV. Life for Kylee’s family revolves around doctors’ visits, hospital stays and dealing with insurance companies. Kylee’s mom Kris and her 4 siblings all show signs of the disease in much lesser degrees.
Kris credits their extended Starlight family with making an immense difference in their lives.
"From our very first Starlight activity, we were made to feel both special and like an everyday family.” Kris and her husband greatly appreciate that Starlight’s programs include Kylee’s brother and sisters too. The constant focus on medical needs is rough on them, and sometimes they act out and get jealous of the extra attention Kylee receives. Participating in Starlight programs is truly positive and meaningful for the whole family.
Even when Kylee seems weary in the face of yet another hospital visit or procedure, she rallies to be a part of Starlight activities. Kylee cut the ribbon on a new Starlight Fun Center® at Children’s Hospital of Los Angeles when she happened to be hospitalized on the day of the dedication. This led to the exciting experience of meeting Jaime Lee Curtis, Sierra McCormick and other Starlight celebrity supporters, and playing video games on the new mobile entertainment unit.
In spite of her illness, Kylee embraces everything she does with wholehearted enthusiasm, seemingly for the pure joy of it. It’s as though she possesses an innate understanding that every day is precious and she knows how precarious life can be.