OGDEN, Utah – When the popular rock band Imagine Dragons performs at the Dee Events Center Oct. 25, Kennedy Hansen will be just one of thousands of adoring fans — and that’s exactly what the 15-year-old West Haven teen wants.
After years of medical testing and obvious signs of vision, physical and mental deterioration, Kennedy was diagnosed four weeks ago with juvenile Batten Disease. The rare, fatal neurological condition gradually destroys brain function, causing seizures, blindness and dementia.
Kennedy already has been robbed of most of her sight, uses a cane for balance and has difficulty expressing herself, but even so, there was no doubt about her thrill when she got the news she had concert tickets.
“She started jumping around and singing all the Imagine Dragons songs she has memorized,” said her aunt, Britney Hansen. “It’s hard to understand Kennedy’s speech, but singing allows her to express herself clearly.”
Kennedy’s official diagnosis confirmed the Hansens’ worst fears, but family members are determined not to spend their last months together watching Kennedy die, but instead watching her live.
Her first request was to attend a concert with her 14-year-old cousin, Shantz. One year apart in age, they share a birthday and a deep friendship.
Shantz’ mother is well aware of the difficult financial burden of Batten Disease, so she called Weber State University, the concert sponsors, to request help with tickets. Kennedy’s parents both attended WSU: Her father, Jason, graduated in technical sales in 1998. Her mother, Heather, was enrolled in child and family studies before a difficult pregnancy with Kennedy forced her to step away from school.
The family now has four concert seats, one of which will accommodate a wheelchair with an excited teenager.
“She is thrilled — as we all are. It will be something exciting for her to remember and for us to cherish her being there,” Heather said. “Even if she’s not as aware at the time of the concert, we’re still going to take her anyway because we might be able to see glimpses of her understanding what is going on. And we definitely would know it’s what she wanted.”
The concert was not the family’s only good news. Make-A-Wish foundation organized a trip to Oahu, Hawaii, June 30 to July 9, where Kennedy’s aunt Keri and her family live. Kennedy wanted to see their home, have her uncle take her surfing, eat a banana off their tree, play in the sand with cousins, walk along the beach with her aunt and give tons of hugs.
“Kennedy is a sweet, amazing child,” her mother said. “Her way of showing people she loves them and appreciates them is she just gives hugs. Because she has a hard time verbalizing it, she just gives hugs. People love it because her strength and her personality shine through.”
Kennedy’s peripheral vision now is limited dramatically and colors have been reduced to shades of gray, but her mother says what she chooses to see is the goodness of people who are helping her to have the experiences every teen wants: a concert, a trip and time with family and friends.
“Our message to people is to try to look at the positive things in your life because you will have so much more success and peace and happiness if you focus on the positive, and you can do so much for others if you have that good attitude. It’s a tough thing, but what we’re going through as a family is already blessing so many people; we’re seeing miracles every day.”
The Imagine Dragons concert is one of a weeklong series of community activities to celebrate the inauguration of Charles A. Wight, the 12th president of Weber State University. The official inauguration is scheduled for Oct. 22. For more information about inauguration events, visit weber.edu/inauguration. Kennedy’s family has also created a facebook page, “Kennedys Hugs,” to share her story.
Visit weber.edu/wsutoday for more news about Weber State University.
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