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Kennedy Hansen had already lost his vision and most of his motor skills to Batten’s disease in 2013, but when one day the leader of his cheerleader team took a circle in training in Asking each member to name their life challenge, Hansen stunned everyone, including her parents, by responding that she didn’t have one.

“Here is a girl who is blind, who regularly had severe nocturnal seizures and who was in pain, and who would die in six months,” said her father, Jason Hansen, in an interview with Batten Disease News from his home in West Haven, Utah. “She was just amazing, so full of love. She was hugging everyone.

Kennedy died at the age of 16 on May 30, 2014, from a rare neurodegenerative disease, which affects approximately one in 100,000 people in the United States, said Margie Frazier, executive director of the Batten Disease Support and Research Association . Kennedy had juvenile Batten, one of the most common among his 14 forms. There are approximately 14,000 cases of Batten disease worldwide, with approximately 1,400 new cases per year.

Kennedy had asked his parents to help raise awareness of the disease. Some days are more difficult than others, but that’s exactly what Jason and his wife Heather do. They wrote a book called “Kennedy’s Hugs” (Cedar Fort, available here or on and were instrumental in the production of “Love, Kennedy”, a film based on the life and legacy of their family. fiery girl.

Although backed by religious faith and a supportive community, it was a long and difficult journey for the Hansen clan, including years of trying to find out what was going on. Kennedy’s first symptoms, which her parents later realized were misdiagnosed, included macular degeneration (part of the retina) when she was 8 or 9 years old. Despite repeated visits to the doctor, Kennedy was not correctly diagnosed until a year before his death, when a pediatric neurologist suggested genetic testing. Batten requires the inheritance of certain parental genetic material.

“I think more people are tested for this and more are being diagnosed,” said Heather Hansen, 41. “So many have had it and passed away without anyone knowing what it was.”

In between, Kennedy developed cognitive problems, repetitive speech, and personality changes, and began to have frequent fits and falls. “It’s a real ugly disease,” Jason Hansen said.

Batten is one of some 50 diseases called lysosomal storage disorders, which means that genetic mutations interfere with the waste disposal capacity of cells. With Batten, a build-up of proteins and lipids disrupts brain cells, leading to progressive neurological impairment and premature death. Due to widely varying genetic mutations, the Batten Arc for each person may vary.

“We just wanted to help her get comfortable,” Heather said. “We had decided that we didn’t want to take the path of a feeding tube and just try to keep it alive.”

Kennedy was aware of her illness – up to a point. “As her brain cognition continued to decline, she began to regress into a childish mindset,” Heather said. “She always understood what was going on, but more on a basic level.”

Yet Kennedy never complained. “We’re very spiritual people,” said Jason, 42, a business executive. “She knew she was coming home and she did it with grace and honor.”

As Kennedy’s disease progressed, the family relied on his support network. After all, the Hansens had two other adopted children to look after. “Everyone was involved, whether it was donating money for expenses or this amazing hospice group. It was wonderful. We couldn’t have gotten out of it all if it weren’t for all of them, ”said Heather, a stay-at-home mom.

The Hansen family

The Hansen family in 2013. From left to right, Anna, Jason, Beau, Kennedy and Heather.

Because Kennedy had asked her parents to share her story, Heather and Jason kept a journal in the last year of their daughter’s life. As fate willed it, Jason ran into a filmmaker friend who, after hearing Kennedy’s story, decided to bring it to the big screen. We wanted it to be real, ”Jason said.

Filmmaker TC Christensen wrote the screenplay based on Jason and Heather’s notes and Kennedy’s Facebook page Kennedy’s Hugs, which chronicled not only the progression of the disease but also Kennedy’s miracle last year, which included the meeting with the group Imagine Dragons. At the time of his death, the page, which Jason eventually took over, had 60,000 likes.

Christensen lived in the Hansen House for several weeks and shot much of the film there. “We were looking around and everyone was in tears,” Christensen said. “But really, it’s not just a tearful movie; it has humor and a message of hope and redemption. It was a joy from start to finish, a young girl’s triumph over illness. She wanted to drive, have a boyfriend, and be a cheerleader, and she did all three.

Fremont High School was devastated upon his death, he said. “They were so good to her. They had accepted her, were watching over her. She was one of them, and that’s important for high school, ”he said.

In his final days, Kennedy’s other cheerleaders came to say goodbye. His funeral brought together more than 1,500 people in mourning.

The film, which ends with a tribute to other Batten patients, opened in early June in Utah and will air through July in other western states before being available on DVD. A portion of the proceeds from “Kennedy’s Hugs” will go to the Kennedy’s HUGS Foundation, established to help people with terminal illness.

“Just cuddle your kids, love your kids everyday,” Heather said. “This is one of the messages.”