Its an honor to be her dad. I feel like I'm kind of unworthy to be her dad because she's so special. How was I so blessed to get the opportunity to have Kennedy? —Jason Hansen
WEST HAVEN, Utah — Kennedy Hansen has listened to Imagine Dragons' hit song "Radioactive" hundreds of times.
"She plays it over and over," said her father, Jason Hansen.
And on Oct. 25, 15-year-old Kennedy and members of the Hansen family will watch her favorite band perform live at Weber State University.
Though this is a dream for many teenagers, this concert is special for the entire Hansen family, which has relied on its LDS faith in coping with Kennedy's terminal illness. In June, Kennedy was diagnosed with juvenile Batten disease, which attacks the nervous system. Her experience of fulfilling another dream — as a cheerleader at Fremont High — was chronicled in the Deseret News earlier this week.
The health challenges started five years ago when Kennedy's eyesight started failing.
After being misdiagnosed initially with Stargardt's disease, a condition that causes blindness in children and teenagers, Kennedy and her family accepted the idea that she would eventually go completely blind.
"To be told you're going to be blind is a big devastator," her father said. "It was shocking. But Kennedy never complained even one time about any of the issues.
"Then her learning (ability) started digressing rapidly. We assumed this was because of her eyesight."
After nearly four years of care from a neurologist, running many tests and examining multiple scenarios, no answers were coming. Jason suggested the genetics department.
Eighteen months ago, the Hansens completed the preliminary paperwork to be placed on the waiting list for the Pediatric Genetics division of University of Utah Health Care.
In June 2012, they were referred to the genetics program and additional testing began.
"Our whole lives changed trying to figure out what was wrong with her," Jason said.
In February 2013, Kennedy's doctor, geneticist Ashley Warnock, prepared Jason and Heather for the worst.
"All she said was, 'I did my thesis on Batten disease, and I pray this isn't what she has. But she's exemplifying tons of these attributes,'" Jason said. "Over the next few months as we read about it, we realized that it was almost textbook of what she was acting like."
The Hansens' lives changed again when the results came that confirmed what they had dared to hope against — a positive diagnosis.
Kennedy is the only known case of juvenile Batten disease in Utah. According to her doctor, there are 500 known cases of Batten disease in the world and only 100 of them are juvenile.
Batten disease, an inherited condition, takes three forms: infantile, juvenile and adult. General symptoms of the illness include loss of vision, personality changes, learning and behavioral disabilities, seizures, loss of motor skills and premature death, according to the Beyond Batten Disease Foundation website.
"It's a mutated gene from Heather and a mutated gene from myself," Jason said. "And we happened to meet and fall in love, and the rest is history. It's a one in 500 million chance, is what (the doctors) say. It's like picking up a grain of sand."
Following the diagnosis, Kennedy was given a couple years to live at best, but because she is at the end of the disease, her parents are prepared that the end may come sooner.
Despite Kennedy's inevitable fate, and the changes that have and will continue to shape the Hansens' lives, they are upbeat.
This positive outlook is due in part to the Hansens' strong ties to their faith as members of The Church of Jesus Christ of Latter-day Saints.
"We've chosen to share her story and to remain positive, and she's going home," Jason said. "We believe in a Heavenly Father who needs her home. She needed to have her life here, and share her legacy here and then move on."
Kennedy's Hugs, a Facebook page started and operated by extended and immediate family, is one avenue the Hansens use to share their daughter's story of love and faith.
"Every day we're having these amazing experiences with her ... so we're just trying to absorb everything, write these things down, and share them with other people so that they can experience her life, so that we can reflect back when it becomes more difficult for us to be able to see the good in it," said Kennedy's mother, Heather. "It will give us that strength to make it through, to see the goodness in what's happening."
In a way, the Hansens see this final chapter of Kennedy's life as a celebration of the goodness that has filled their lives.
And while on the road of great sorrows and great acceptance, the Hansens are learning lessons from Kennedy, too.
"She gets to return to heaven, how lucky for her, while the rest of us stay here. It's not that she's lucky to go through the experiences; she's learning and she's growing so much spiritually. She's well beyond us," Heather said. And we're all learning from her how to be more thoughtful about other people, how to be concerned, how to love, how to express that."
While Kennedy is the only blood daughter of Jason and Heather, their family also includes an adopted daughter, 16-year-old Anna, and son, 5-year-old Beau. Jason said the siblings have always been close.
Earlier this summer, Kennedy and her family were given a trip to Hawaii organized by the Make-A-Wish foundation.
Jason said it was Kennedy's wish to see family members, who live in Oahu.
"Hawaii wasn't for us. That was for her cousins," Jason said. "We watched Kennedy play dolls with her cousins and go to the beach. She got on a paddle board. She surfed on her knees. There are a lot of miracles, little tender mercies she will never forget."
Since Kennedy's diagnosis, the family has connected with extended family members who have come to visit Kennedy in the last chapter of her life.
In fact, it was because of Brittany Hansen, Kennedy's aunt, that her dream of seeing Imagine Dragons came true.
The concert is part of the inauguration of Weber State University's new president, Charles Wight.
"This was one of Kennedy's dreams to go to a concert. With all the medical bills, they didn't think they could afford that luxury," said Bev Rudd, Weber State's event coordinator. "Once we heard the story, we were able to accommodate their needs."
Weber State, where both Jason and Heather attended, is providing the family with tickets in a wheelchair-accessible area.
According to a press release from Weber State, when Kennedy heard the news she started jumping up and down and singing all the Imagine Dragons' songs she had memorized.
"It's hard to understand Kennedy's speech, but singing allows her to express herself clearly," Brittany said in the press release.
A video of Kennedy singing "Radioactive" was sent to the band. Jason said the family got a call from the band asking if Kennedy could come on their bus the day of the concert.
Extended family members started a foundation for Kennedy to help offset medical costs to help the family who has sought to help so many others during their time of need.4 comments on this story
"She's just a special girl, really. She touches so many people. Something happens every day where she reaches out to people," Jason said. "Its an honor to be her dad. I feel like I'm kind of unworthy to be her dad because she's so special. How was I so blessed to get the opportunity to have Kennedy?"
Contributing: McKenzie Romero
Emmilie Buchanan-Whitlock is an intern for the Deseret News with Mormon Times. She recently graduated from Brigham Young University-Idaho. Contact her by email: email@example.com or on Twitter: emmiliewhitlock