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

Published: Sunday, June 8 2014 12:01 a.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

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

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.

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."

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.

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