APPLETON – Jerika Bolen, the 14-year-old Appleton girl whose decision to end treatment of her brutal disease drew nationwide support and stoked new debate on right-to-die issues, died on Thursday, her mother, Jen Bolen, said.
Jerika followed through on her decision to enter hospice and end an arduous, lifelong fight against Spinal Muscular Atrophy Type 2, an incurable and progressive disease that racked her body and brought continual pain. She died at Sharon S. Richardson Hospice in Sheboygan Falls. Jerika never walked, and as a teen only had movement in her head and hands.
Her decision to cease treatment and the planning of a special prom in her honor in July — her last wish — drew national attention and an outpouring of affection. She later became a focal point of debate.
“My only words to anyone questioning this is that I love that girl with every cell in my being,” Jen said Thursday, “and no one in their right mind would let someone suffer like she was.”
Jerika made peace with dying, knowing that to continue would mean greater hurt, loss of her already limited function and still more trips to the operating table. But it was no quick or easy decision, she said earlier this summer, mostly in recognizing the grief her mother would experience.
“When I decided, I felt extremely happy and sad at the same time,” Jerika said in July. “There were a lot of tears, but then I realized I’m going to be in a better place, and I’m not going to be in this terrible pain.”
Their story — one of an unflappable mother-daughter bond and the emotion of trying to figure out just how to say goodbye — resonated with people around the country, many of whom reached out to the family via social media.
Jen Bolen said she understood her daughter’s decision, and had for several years prepared herself to stand behind her when the pain became too much. But it was a process easier said than done. “I wish there was some sort of instruction book,” Jen said.
The prospect of saying goodbye grew more difficult with every passing day.
“There’s part of me still holding onto that thread,” she said in late July. “Is she absolutely sure?”
‘There’s a light she brings’
Jerika never wavered in her decision, but she was intent on a having a full summer with friends and family — especially her mom — before letting go.
Jen, a nurse and single mom, stayed busy with plans for the prom, dubbed “J’s Last Dance.” More than 1,000 well-wishers would flock to Appleton’s Grand Meridian banquet hall on July 22 for a night that included a police escort and a visit from one of Jerika’s favorite celebrities, YouTube music star Richie Giese.
But Jerika inspired long before the lights went up and music filled the room.
Friends and family said Jerika’s true beauty was demonstrated by how she lived day in and day out.
Robb Valentyn, director of the annual Muscular Dystrophy Association summer camp in Green Lake that Jerika attended, said Jerika refused to let her disease get in the way of living life.
“There’s a light she brings everywhere she goes,” Valentyn said. “It’s amazing how she doesn’t let it affect her day to day, and she has the worst form of this disease imaginable. It’s great for these 40 or so other kids at camp to see. When it comes down to it, it’s about keeping a positive attitude.”
She was every bit a teenage girl. At 14, she liked hair dye and would frequently switch her look — but always to bright colors. She liked alternative music, watching videos on YouTube and playing computer games. Over the summer, she was often out in the company of friends or nurses for sessions of Pokemon Go, a game she promptly proclaimed “the best app ever.”
Friends said Jerika wore a wide smile throughout her life, a smile that often masked intense pain.
“Even she can’t put into words the pain she’s in,” Valentyn said. “But if she’s in the hospital and you’re on the phone with her, you’d never know it.”
She wasn’t one to complain — it was her biggest pet peeve. She also wasn’t one to get jealous. She enjoyed the abilities of other kids and watched as they engaged in dance or gymnastics.
Angie Frank, one of Jerika’s private duty nurses, said she had “a twisted sense of humor, and it’s endearing.”
It was a function of Jerika making the most of life from her one place of strength, her mind.
“She’d think day and night of different things and from different angles,” she said.
As cards and gifts poured into their home this summer after a Post-Crescent story introduced her to the world, Jerika’s humility shined through. She said she was baffled by all the love and attention.
“I’m just a nobody,” she said, but she enjoyed her sudden celebrity status and the new attention it brought to Spinal Muscular Atrophy.
“People are more aware of my disease, because not a lot of people knew about it,” Jerika said. “Now we’re spreading the word and that’s really good.”
‘Whatever she needs to do’
Spinal Muscular Atrophy, or SMA, destroys nerve cells in the brain stem and spinal cord that control voluntary muscle activity. Without work, the muscles waste away.
Jen knew something was wrong at 8 months when her daughter went from nearly crawling to an inability to hold herself up.
After receiving a devastating diagnosis, she vowed to give her daughter a full, rich life — and one that went far longer than doctors suggested she could expect. She was initially told Jerika would be lucky to make it past her second birthday.
So they fought. Jen joined support groups and learned all she could.
“Jennifer is one of those people who does whatever she needs to do,” her mother, Sue Bolen, said. “She doesn’t take no for an answer.”
Jerika understood early on she’d probably die before many of her friends. By 3, they’d already released balloons several times to commemorate friends met through the Spinal Muscular Atrophy community who lost their battles.
But even while fighting, Jerika was given space to be a kid.
She went to school at Appleton’s Janet Berry Elementary School and spent a year at Valley New School. She recently completed eighth grade through the online Wisconsin Connections Academy.
Jerika and her mother were deeply connected to disability causes.
In 2010, the Bolens joined another family in organizing an Appleton bowling event that raised more than $2,200 for Spinal Muscular Atrophy research. Jerika and Jen worked in 2015 to establish a power wheelchair soccer league in the Fox Cities before Jerika’s health issues sidetracked their involvement in the project.
Jen said she lived for the fight through Jerika. But as a nurse, she also understood they were running out of options and Jerika was more interested in truly living than in longevity.
“I still can’t believe we’re doing this,” Jen said in early summer. “The quality is kind of gone, and that’s where we’re at.”
‘I know your pain’
Jerika’s hospice decision didn’t come without controversy.
Those who’ve lived with the disease into adulthood were among the most vocal in expressing hope that Jerika would change her mind.
A video plea from Jordan Schroeter, a Grafton man with Spinal Muscular Atrophy, went viral.
“Please reconsider your decision,” he told her. “I know your pain and everything you're talking about, but sweetheart, you have so much left to give."
Adults with neuromuscular diseases engaged in a letter-writing campaign to the teen.
Others were more direct in their attempts to intervene. Five disability rights groups reached out to child protection authorities and asked for an investigation into Jerika’s care.
But Jen defended her daughter at every turn.
Every case of Spinal Muscular Atrophy is different, and for Jerika, its impacts came strong and early. And her life became far more difficult over the last three years. At age 11, hospital stays grew frequent — “I don’t even know how many times that year,” she said.
Last year, she had the heads of her femurs removed as a pain relief measure — but it didn’t work. She had her spine fused in 2013. She would soon need a gastrointestinal surgery, and when her ventilator could no longer keep up, a tracheotomy.
Those who didn’t know Jerika and those who hadn’t been along on their journey simply couldn’t know, Jen said.
“Any real parent who’s seen the suffering she’s had would be making this same decision — would let her make this decision,” she said.
‘In the hearts of many’
Jerika said she had been ready to die for some time, but first they’d camp, take a trip to Chicago and visit family in Michigan.
Frank said she’ll hold their relationship dear — one developed beyond patient and caretaker. She likes to think they taught one another. Frank accompanied Jerika to school and would help with homework. They cooked together and enjoyed the fruits of that labor.
Frank was often struck by an attitude that didn’t match Jerika’s circumstances.
“She made a difference for the gratitude in my own life,” Frank said. “It makes you grateful for what you do have and not worried about what you don’t.”
As summer began, Jerika couldn’t have possibly known she’d inspire people from around the world to think deeper about life.
Jerika’s big prom night drew visitors from as far as California, and strangers expressed what Valentyn had long thought.
“She has her crazy hair, crazy everything, but she’s the most amazing kid you could ever meet,” he said.
By prom time, celebrities had taken notice of Jerika’s story, including Giese, the electro pop performer who goes by the name Social Repose and flew in from Washington, D.C., to surprise her.
Later, she received a video of messages from bands participating in the Vans Warped Tour.
George Takei, the former “Star Trek” actor better known among Jerika’s generation for his witty, social media commentary, turned to poignant words on Facebook in August.
“She will forever dance among the stars, and in the hearts of many,” Takei wrote of Jerika.
