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, in place of the usual hair bands, glittery notebooks, colorful pencils or any of the other things you might find in most little girls’ backpacks 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 has had severe health problems, including digestive issues, seizures, developmental delays, a lazy eyelid covering half her pupil and an inability to sweat or regulate her body temperature in extreme heat or cold. Doctors inserted her first feeding tube at 23 months, and she has since had 5 major surgeries, 7 minor surgeries and countless painful and invasive diagnostic tests.
For years, doctors were unable to figure out the cause behind Kylee’s symptoms. Then, shortly after her fourth birthday, Kylee’s mother, Kris, connected over the Internet with the mother of a young boy with Mitochondrial Disease who found Kylee’s symptoms to be all too familiar. The more Kris read about Mitochondrial Disease, the more she thought the mother could be right.
Under the care of one of only five geneticists in the country who specialize in the disorder, a muscle biopsy in 2008 confirmed that Kylee had Mitochondrial Disease Complex III and IV — a genetic disease passed down through the maternal DNA line that takes more children’s lives than cancer. Since 90 percent of the human body is made up of mitochondria, the disease affects every muscle and major organ.
As it turned out, Kris has a mild version of it and Kylee’s 3 older sisters and one brother all show signs of it in varying degrees. But Kylee is the sickest.
"It definitely hasn’t been easy," says Kris. "Our lives revolve around doctors’ visits, hospital stays and dealing with insurance companies."
Kris credits their extended Starlight family with making a big difference in their lives.
"From our very first Starlight activity, all we could say was ‘wow.’ The way we were made to feel both special and like a normal family at the same time was amazing. It was the first time outside the hospital that Kylee got to see other kids with medical issues — you don’t see many kids around here wearing backpacks with a feeding pump! I will never forget when she said, ‘Mommy that little boy has a feeding tubie like me!’ With Starlight children, she got to feel like a regular kid.
"But it isn’t just children with a medical condition — Starlight helps the brothers and sisters too. It’s been rough on my other children. Sometimes they get jealous of the attention or act out. They recognize that what Starlight does for them is very special. Last summer, they sold cookies in our yard and were thrilled to give the $75 they earned to Starlight to help other families. My husband and I are grateful to Starlight for continuing to give all our children so much joy."
At times, Kylee seems weary in the face of yet another hospital visit or procedure. However, most days, in spite of her illness, she 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 knows how precarious life can be.
"I’ve told every other family I know with a seriously ill child about Starlight, because I know the difference it’s made in our lives and want others to benefit. Finding an escape from the daily realities that come with serious illness is such an amazing gift — both for our children and for ourselves."