Terminally ill Fremont cheerleader an inspiration for teammates

Friday , March 28, 2014 - 12:18 PM

Nancy Van Valkenburg, Rachel Trotter

PLAIN CITY — Some high school cheer coaches might spotlight their most gifted, elite team members when the regional championship was at stake.

But for Fremont High cheer coach Jill Schofield, spirit tops all else. And the cheerleader with the strongest team spirit may just be Kennedy Hansen, who is blind, has lost most of her verbal ability, suffers seizures, and who moves around the field with a little help from her friends.

“She’s known as ‘the angel of Fremont High,’” Schofield said of Kennedy, 16, who has juvenile Batten disease, a genetic disorder that is rare, degenerative and terminal.

“It wasn’t an issue with me,” said Schofield, of the thought that Kennedy’s participation could hurt the cheer team’s chances of winning. “Kennedy has changed all our lives for the better. She may not be here next year, but 20 years from now, when the other 27 girls look back on this journey, the metal and plastic trophy will long since be in the garbage. In the end, when we look back and see what we have achieved in life, it’s not going to be about the trophies and plaques. It will be about experiences of the magnitude of the one we’ve had with Kennedy.”

So Kennedy, flanked by teammates to keep her safe, cheered at the Feb. 8 regional competition. Other cheerleaders squeezed her to signal when it was time for “strong arms,” or other movements worked out with Schofield.

On Feb. 8, Fremont High’s cheerleaders took top regional honors for the 5A division, and advanced to Saturday’s state-level held Saturday in Draper. And on Saturday, Kennedy and her teammates took second place, statewide, in their division.

“We didn’t compete for a trophy,” Schofield said, after the Feb. 8 win. “We competed specifically because we wanted the judges, the audience, and the other coaches and team members to feel the spirit of Kennedy that we had felt. We wanted them to see a little glimpse of the miracle we had experienced. When the judges called our name, it wasn’t about winning. It was about spirit.”

Kennedy was first profiled by the Standard-Examiner last July, after Weber State gave her tickets to see her favorite band, Imagine Dragons, at a fall concert. Schofield became aware of Kennedy and her dream to be a cheerleader at the start of this school year.

“She always wanted to wear that uniform,” Schofield said. “Most cheerleaders prepare for years, then try out for the team. Kennedy was on that path, then she got hit with Batten disease.”

Batten disease is caused by a rare genetic mutation carried by both parents. Kennedy was 10 and a straight-A student when early symptoms began to appear. Symptoms included significant cognitive decline, vision, language and mobility losses, and increasing episodes of dementia. Batten disease also greatly decreases victims’ life spans. Only about 500 people in the United States have juvenile Batten disease. Extended family members have chronicled Kennedy’s journey on Facebook. The Kennedys HUGS page has more than 6,100 likes.

“Kennedy was adamant with her parents that she was going to be a cheerleader,” Schofield said. “They told her it probably was not going to happen.”

Schofield said within two days of hearing about Kennedy, she had talked with her cheerleaders, who urged her to invite Kennedy to cheer. Schofield contacted the woman who many months earlier had taken the school’s order for cheer uniforms, and learned there was just enough fabric for one more uniform, which, miraculously, could be ready to ship in six days.

“So we went to Kennedy and I knelt by her desk, and told her, ‘It just so happens we need one more cheerleader,’” Schofield recalled. “There were hugs, and we took pictures and gave her pompons.”

Kennedy attends one cheer practice a week, and has cheered at many games this school year. Sometimes she does the exact cheer motions, and other times Kennedy does her own interpretations of the cheers, Schofield said.

“I’ve been grateful to be Kennedy’s coach, and to see the competitor she would have been without this disease,” Schofield said. “Even with the limitations she has, she still does remarkably well with the things I ask her to do.”

Jason Hansen, Kennedy’s dad, said his daughter’s symptoms are getting worse.

“She’s about on a preschool level,” he said, of Kennedy’s cognitive state. “She used to be able to see some shades of red, but she’s now 100 percent blind. The other thing is, two weeks ago, her doctor officially put her on hospice, which is end of life care. It’s pretty amazing to us that her medical team wants her on hospice, but she is so full of life, and she wants to cheer.”

Hansen said a nurse visits the family’s West Haven home three times a week, a social worker and chaplain each come twice a week. The latter two come to support the family, which also includes mom Heather and Kennedy’s siblings, Anna and Beau, who were adopted and are not at risk for Batten disease.

But Kennedy’s favorite weekly visits come from her fellow cheerleaders.

“They seem to bring out a side of her that keeps her alive,” Jason Hansen said. “If I tell her, ‘Kennedy, the cheerleaders are coming over,’ she animates and gets so excited. She’s so happy.”

Several cheer teammates come over before each game to do Kennedy’s hair and makeup.

“She just has so much love for them,” Hansen said. “One recent week she actually had a seizure at one of the games. Two cheerleaders are always right by her side, holding on. You can see their love, care and concern. These cheerleaders are competitive, but they really don’t care what happens with their season because either way they have won. There’s not one cheerleader that hasn’t shown Kennedy kindness and love, and in return, Kennedy loves them.”

Schofield said it’s been hard for the cheerleaders to watch Kennedy’s decline, but the teen has become an inspiration to them and the entire Fremont High student body.

“Her disease is taking its toll on her body, but something kind of magical happens when she gets with the cheerleaders,” the coach said. “Her energy is up, her coordination improves, her speech improves, just for short periods of time.”

Schofield said the team is not 27 girls plus Kennedy, it’s 28 girls.

“She was meant to be here,” the coach said. “She has taught us all so much. We have learned to be grateful for what we have, because you never know when it could change. We have learned to enjoy the moment.

“I asked Kennedy at one of our meetings if she had any challenges, and she said no. I asked the girls why Kennedy had no challenges, and they told me it was because she didn’t see them that way. There were 27 girls with tears streaming down their faces. I could have tried to teach those kids for 10 years to embrace their personal challenges, and use them to become stronger human beings, and they never would have learned what they learned from Kennedy in those two minutes. She is remarkable and amazing, and those words are still too weak. She has been a life changer for all of us.”

Hansen said prior to Saturday’s competition that he would be sorry to see the season end.

“But win, lose or draw, it doesn’t matter,” he said. “They will have an amazing day.”

Contact reporter Nancy Van Valkenburg at 801-625-4275 or nvan@standard.net. Follow her on Twitter at @SE_NancyVanV.

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