Kristin Murphy, Deseret News
DRAPER — A smile crosses Kennedy Hansen's face, lighting her sightless eyes, as she feels the shape of a gold star atop a cheerleading trophy.
It's a prize her parents, coaches and teammates on the Fremont High cheerleading squad didn't believe she'd be part of when they presented the terminally ill girl with a uniform and pom-poms four months ago. Together, the girls stand, guide Kennedy to the center of their circle, then dance around her as she hoists the second-place trophy into the air.
Kennedy can't see it, but they're weeping.
"I didn't think she'd get this far," says her mother, Heather Hansen, watching from the bleachers after Saturday's state cheerleading competition. "I feel like this is the peak of her cheerleading moment, and now it's going to start slowing down for her. But she wanted to make it this far, and so she did."
Kennedy has the mind of a child, thinking and feeling more like a 5-year-old than the high school girl that she is. The 16-year-old was diagnosed last year with juvenile Batten disease, finally putting a name to the neurological condition that has slowly claimed Kennedy's vision, motor skills, mobility and cognitive abilities.
In elementary school, when her mind and sight were clear, she loved to dance and wanted to become a cheerleader — a wish that has now come true thanks to the team at her Plain City school.
"That first home football game against Northridge, we were hoping she would be able to cheer through one quarter. She cheered the whole game and she's cheered at pretty much every game ever since," coach Jill Schofield said. "Then we were praying she'd be healthy enough to compete with us once, and she's been at every single competition."
The Hansen family was stunned as they watched Kennedy thrive alongside the cheerleaders, showing a sparkle of personality and intelligence that had been slipping away. The girls incorporated their new teammate into practices, choreographed a simple but meaningful part for her in their routines and began visiting her West Haven home two or three times a week just to play with her.
"To be completely honest, I didn't think she would still be standing," said Emily Woodyatt, a junior on the team, after sharing a tearful hug with Heather Hansen. "I thought that she would be in her wheelchair, and the fact that she is still with us and was able to walk onto the mats was really special."
But things are getting harder for Kennedy as the disease progresses. Her parents bring her into the gymnasium in a wheelchair that she didn't need a few months ago but will soon require full time. And her mental lapses are lengthening.
"This morning we didn't even know if we were going to be able to come today," said Kennedy's father, Jason Hansen. Preparing for Saturday's competition at Juan Diego High School took more than three hours just to feed, dress and motivate Kennedy, who was struggling to recognize her surroundings.
Only two to four children out of every 100,000 are born with Batten's disease in the United States, and those with the rare condition don't generally survive into their 20s. Kennedy's time is running out.
Heather Hansen believes that the social interaction with the cheerleaders has had the biggest impact on Kennedy, staving off the moment when her mind will close in on itself for good.
"It's what Kennedy really, really needs right now more than anything else," she said. "At this point with her disease she's not going to continue to learn. If anything, she's going to be declining mentally, in every way. But she's always going to enjoy those visits and having interaction with people as much as she possibly can, until she's unaware of it."
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