Family, friends making West Haven teen’s every last moment count
Kennedy Hansen, 15, of West Haven, talks to her friends at Crystal Hot Springs in Honeyville on Wednesday. (REYNAlDO lEAl/Standard-Examiner)
Kennedy Hansen (left) and her mother, Heather, pose for a photo at Crystal Hot Springs in Honeyville. (REYNAlDO lEAl/Standard-Examiner)
Kennedy Hansen (left) walks out of her tent with the help of a friend at Crystal Hot Springs in Honeyville, Wednesday, July 17, 2013. (REYNAlDO lEAl/Standard-Examiner)
Kennedy Hansen (left) walks out of her tent with the help of a friend at Crystal Hot Springs in Honeyville, Wednesday July 17, 2013. (REYNALDO LEAL/Standard-Examiner)
WEST HAVEN — As a degenerative disease dims the world around Kennedy Hansen, those who hear about the West Haven teen are finding ways to brighten her life.
Kennedy, 15, has struggled since age 10 with declining eyesight, mobility, and communication and cognitive abilities, but got her final diagnosis just June 5.
She has juvenile Batten disease, a rare genetic condition that is terminal. But Kennedy, now blind and functioning intellectually at about a first-grade level, still finds vivid moments of joy, said her mom, Heather Hansen.
“Kennedy is a sweet, amazing child. 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.”
Wednesday found Kennedy at her church group’s girls camp, lounging near the water at Crystal Hot Springs. She was excited to “see the girls” and “eat treats,” she said through her mother.
Early July found Kennedy on a Make-A-Wish Foundation trip to Hawaii, where she played with cousins she had never met, used a cane and wheelchair to visit sites with her aunt, and, accompanied by a lifeguard, went out on the water to touch a waterfall.
And Oct. 25 will find Kennedy with her parents and cousin Shantz at Weber State University’s Imagine Dragon concert as a guest of WSU.
The cost of Kennedy’s medical treatment has left no funds for extras like a concert, even if Imagine Dragon sings Kennedy’s favorite song, “Radioactive.” Cousin Shantz Hansen, 14, of Farmington, taught Kennedy the words.
So Shantz’s mom, Britney Hansen, approached Weber State with a request for two tickets so Kennedy and Shantz could attend. WSU gifted the family with four seats.
“She is thrilled, as we all are,” Heather Hansen said of Kennedy. “It will be something exciting for her to remember and for us to cherish her being there. 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.”
Jason Hansen, Kennedy’s dad, said there are about 500 known cases of juvenile Batten disease, and Kennedy’s seems to be the only case in Utah. Those who have it can live to their late teens or early 20s.
“Her body is dying,” Jason Hansen said. “Her doctor says she has, at best, two years to live, but as parents, we feel it’s a little less than that. We are seeing the digression every day. I go to work, and when I come home, she’s a little worse.”
Kennedy was 10 and an A student when her parents noticed her vision problems. When her grades fell, they thought it was vision-related.
“She was very intelligent, perfectly normal, into dance and a great athlete,” Jason Hansen said. “When she was 11, her cognitive skills began to decline, and we thought it was a learning disability. By 12, we knew it was something deeper.”
The Hansens took Kennedy to specialists for each of her problems. Eventually, a doctor referred the family to the University of Utah Medical Center genetics department. The third test revealed her disease, caused by a rare gene mutation carried by both Jason and Heather.
“There was a grain of sand’s chance that we would meet, fall in love and have Kennedy,” Jason Hansen said. “I tell people her disease is so rare, when I found out, it didn’t surprise me, because she’s always been special. It’s not easy, the path we are on, but we are trying to help her enjoy the rest of her life.”
The Hansens were unable to conceive more children, so 11 years ago, they adopted Anna, who is Kennedy’s age and remains her constant companion and best friend. Brother Beau, 4, came to the family more recently.
“It was a blessing,” Jason Hansen said. “If we had more kids, they would have had this disease, and that would have been a tragedy more than a blessing. We are lucky that way.”
Hansen said family, friends and the community have been supportive. “It gets me choked up. Every day, people do little things for us. They are there for us.”
Hansen owns a local nutritional supplement business, The Body Evolution, but took on a second job for the pay and insurance. He commutes to Orem to work for Complete Merchant Solutions.
His employer has been supportive, as have people on the two Weber State boards on which he serves, one related to COAST scholarships and one for the Technical Sales department, from which he graduated in 1998.
“Everyone at Weber State has been great, and now they give us these tickets,” he said. “Kennedy couldn’t be more excited.”
Kennedy lost most of her language skills at age 13 but, through a quirk of brain function, can still sing lyrics, especially those of “Radioactive.”
“She plays that song every day,” Hansen said. “I get sick of it, but it makes her happy.”
And everything the family does is about making Kennedy happy. An uncle started a Facebook page, Kennedys Hugs, which brings in new friends and supporters daily. And Kennedy is still aglow with one Hawaiian memory.
“She wants me to tell you a boy kissed her,” Heather Hansen said. “The lifeguard who took her to the waterfall kissed her forehead, and she wants that in the paper. He was in his late 20s, and he told me he could feel her spirit and had never had such a moving experience in all his years working there. Kennedy says, ‘Boy kiss.'”
Happy moments are everything, Jason Hansen said. “She has never once complained, not once. She told me when she gets to the other side, Heavenly Father and Jesus will heal her, and she’ll be fine.”
