National Edition

Imagine Dragons reaches out to terminal teen

Published: Thursday, Oct. 24 2013 8:45 a.m. MDT

Kennedy Hansen with her mother, Heather Hansen.

Facebook/Kennedy's Hugs

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.

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