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Kennedy's story: Family hopes to honor girl's wish to share story of love and faith

Published: Sunday, Aug. 2 2015 4:50 p.m. MDT

From left, Fremont High School cheerleaders Kennedee Hansen, Kennedy Hansen and Kendee Sanders cheer for teammates in the jump competition at the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News) From left, Fremont High School cheerleaders Kennedee Hansen, Kennedy Hansen and Kendee Sanders cheer for teammates in the jump competition at the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News)

OGDEN — When a friendly man in Hawaii rented her a life jacket so she could try floating on a surfboard for the first time, Kennedy Ann Hansen thanked him with a hug.

The man obliged, asked to take a picture with Kennedy, and told her family that the life jacket rental was on the house.

He didn't know the smiling teenager with long, deep brown curls was battling a debilitating and painful disease, that her sightless eyes had once been bright and active, or that this trip to visit relatives was one of her requests for the final year of her life.

"But he could feel Kennedy's spirit," said Kerilyn Pollock, Kennedy's aunt, as she joined other relatives sharing memories of the loving 16-year-old at her funeral Thursday.

Telling Kennedy's story

Kennedy Hansen, center, has fun laughing with Jaycee Gochis, left, and Kallie Edwards as the cheer squad was on hand for the Fremont at Viewmont football game on Wednesday, Oct. 16, 2013, in Bountiful. Kennedy recently died of juvenile Batten disease. (Matt Gade, Deseret News) Kennedy Hansen, center, has fun laughing with Jaycee Gochis, left, and Kallie Edwards as the cheer squad was on hand for the Fremont at Viewmont football game on Wednesday, Oct. 16, 2013, in Bountiful. Kennedy recently died of juvenile Batten disease. (Matt Gade, Deseret News)

The funeral service at the Dee Events Center took place one year to the day after Kennedy was diagnosed with Juvenile Batten Disease, a rare and mysterious neurological condition that affects two to four children out of every 100,000 born in the United States.

Kennedy, of West Haven, was the last surviving child with Batten Disease in Utah.

For more than five years before the diagnosis, the unnamed disease had slowly claimed Kennedy's cognitive abilities, motor skills and eyesight. Her mind became that of a child again, and her parents began to realize that whatever was changing their daughter would eventually take her life.

But the frightening changes to Kennedy's body and mind didn't take her desire to befriend everyone around her, and when words failed her, she communicated through powerful hugs.

From left, Kendee Sanders, Kennedy Hansen, and Emily Woodyatt sit with their fellow Fremont High School cheerleaders after they competed in the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News) From left, Kendee Sanders, Kennedy Hansen, and Emily Woodyatt sit with their fellow Fremont High School cheerleaders after they competed in the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News)

At Kennedy's request, Jason and Heather Hansen created a Facebook page last year, Kennedy's Hugs, to share their daughter's story. She wanted people to know what the disease looked like day-to-day, and she wanted to show that despite the pain, she still loved life and trusted in God.

"Kennedy wanted her story shared," said Jason Hansen, Kennedy's father, who took over posting on the page as the days passed. "She wants everyone to feel important and loved."

The Facebook page grew until more than 8,000 people had liked it and began sharing their well-wishes for Kennedy on her family's frequent posts.

As word of Kennedy's death spread last week, so did her story. At the time of her funeral, the page was approaching 60,000 likes, her uncle told the crowd.

"That group would fill the Dee Events Center 50 times," said Chris Hansen, who founded the Kennedy's Hugs Foundation to assist with his niece's medical expenses. "That's Kennedy's love. That's Kennedy's heart."

From left, Fremont High School cheerleaders Kennedee Hansen, Kennedy Hansen and Kendee Sanders react as they pretend to have a boy on the phone for Kennedy Hansen at the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News) From left, Fremont High School cheerleaders Kennedee Hansen, Kennedy Hansen and Kendee Sanders react as they pretend to have a boy on the phone for Kennedy Hansen at the state championships at Juan Diego Catholic High School in Draper on Saturday, Feb. 15, 2014. Kennedy recently died of juvenile Batten disease. (Kristin Murphy, Deseret News)

Through the Facebook page, condolences to the family have come from around the world, Chris Hansen said. Over the weekend he received a message saying Kennedy's story had been shared during a church service in Thailand. Another came from a group in Pennsylvania that had been following the story. They were sending their love together since they couldn't attend the funeral.

Jason Hansen's daily messages on the Facebook page evolved into small essays, sharing memories of Kennedy's childhood or difficult accounts of what it's like for a parent to care for a terminally ill child.

Moments too personal to share fill a growing stack of journals that Jason Hansen hopes to eventually turn into a book. Kennedy asked him to share her story with as many people as possible, and he intends to.

Many of the family's messages focused on their faith as members of The Church of Jesus Christ of Latter-day Saints.

Kennedy Hansen is known for her hugs as she hugs Jaycee Gochi in between cheers during the Fremont at Viewmont football game on Wednesday, Oct. 16, 2013 in Bountiful. Kennedy recently died of juvenile Batten disease. (Matt Gade, Deseret News) Kennedy Hansen is known for her hugs as she hugs Jaycee Gochi in between cheers during the Fremont at Viewmont football game on Wednesday, Oct. 16, 2013 in Bountiful. Kennedy recently died of juvenile Batten disease. (Matt Gade, Deseret News)

"Kennedy rarely opens her eyes anymore unless she is looking toward Heaven. The past few weeks, there have been several nights where Kennedy is seeing well beyond this life and into the next," said a message signed by Jason and Heather Hansen and posted to the Facebook page a few weeks before Kennedy's death.

'This is Kennedy's day'

More than 1,500 friends, family and strangers who had learned Kennedy's story in recent months attended her funeral at Weber State University on Thursday. Last fall the campus was the site of an Imagine Dragons concert where Kennedy met the band and had her favorite song dedicated to her, and a perfect Sweet 16 party with as many friends as she could invite.

Kennedy's parents stayed close together Thursday as they smiled at moments and let silent tears fall at others. They had planned for this moment.

Friends and family wrote messages on the coffin's vault at Kennedy Hansen's funeral in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography) Friends and family wrote messages on the coffin's vault at Kennedy Hansen's funeral in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography)

They greeted the long line of visitors that passed by Kennedy's casket and admired beautiful paintings of her, dressed in white and looking heavenward, or kneeling at the feet of Jesus Christ.

"She'd be so happy you're here," they said. "Doesn't she look beautiful?"

The service was full of meticulous detail, from the pink and green balloons, ribbons and flowers that lined the room to the displays of Kennedy's pictures, cowgirl boots, favorite toys and a Fremont High cheerleading uniform. Each was placed as a celebration of her life rather than a memorial to her death.

"This is Kennedy's day," Jason Hansen said. "She gave so much that it was our time to give back to her."

Pallbearers carry the casket of Kennedy Hansen in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography) Pallbearers carry the casket of Kennedy Hansen in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography)

Heather Hansen's voice was peaceful as she spoke during the memorial. Her message, she said, would focus on what Kennedy would want her friends far and wide to know.

She recalled her daughter's complete faith as a 4-year-old, holding a phone and asking, "How do I call Heavenly Father?" Prayer and study, no matter the religion, can be a powerful comfort, she said.

Heather Hansen also shared her daughter's deep trust in the LDS Church priesthood blessings she received throughout her illness, which offered comfort and direction as her days grew shorter.

Kennedy was constantly developing her special talent for loving others, being kind and sharing, the girl's mother said, holding up a sticker-covered paper labelled "Kennedy's Nice Chart."

Setting of the Kennedy Hansen funeral at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography) Setting of the Kennedy Hansen funeral at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography)

"As I look out today, I can see she accomplished that," Heather Hansen said. "She loved, she prayed, she believed."

A legacy of love

When Kennedy passed through the halls at Fremont High School, her happiness was infectious, said Jaden Loftus, the love of 16-year-old Kennedy's life.

Anyone who came in contact with Kennedy at school was happy for the rest of the day, Loftus said at the funeral. He wasn't nervous as he looked out at the large crowd, thanks to Kennedy's kind and fearless example.

Kennedy called Loftus her boyfriend. It was a connection some people might not understand, the high school junior said. Loftus was dating a girl at school, but in her childlike state of mind, all Kennedy understood was that the boy who took her to dances, visited her at her house and accepted her love notes made her feel special.

The Kennedy Hansen funeral takes place at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography) The Kennedy Hansen funeral takes place at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography)

"I was a friend to her and she was a friend to me, and at the end of the day we were both happy to spend time together," he said.

Loftus, who intends to serve an LDS Church mission after his senior year at Fremont High, said he will take Kennedy's example with him.

"She taught me to show true love in the simplest of ways," he said. "When I'm out on my mission or when I'm out and about just meeting new people, I'll be able to become friends with them because Kennedy taught me to be a good friend to everyone."

At the Ogden City Cemetery, Kris Neville signalled Kennedy's brother and sister closer and whispered to them, coaching them as they released a flock of doves.

The Kennedy Hansen funeral takes place at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography) The Kennedy Hansen funeral takes place at Weber State University in Ogden, Thursday, June 5, 2014. (Kirby Mortensen Photography)

Neville, a Hooper resident, had never met the Hansens, but she had seen Kennedy's story shared online and volunteered her birds for the service.

"When something really sad happens, we ask, 'What can I do?'" she said. "This was something I could do."

Kennedy's teammates from the Fremont High cheerleading squad hugged one another and joined those writing messages on the vault that would soon be lowered into the earth.

Along with everyone at the funeral, they had been challenged by their coach, Jill Schofield, to continue Kennedy's legacy of kindness that they'd shared in during a "dream year."

"Kennedy would want us all to learn something," Schofield said. "For someone who was supposed to have so many limitations, she had none."

Email: mromero@deseretnews.com Twitter: McKenzieRomero

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