Jerika Bolen, the 14-year-old Appleton, Wis., teen whose decision to cease treatment of her brutal spinal disease drew national support, generated a farewell prom, but also sparked a new debate on right-to-die issues, died on Thursday, her mother, Jen Bolen, said. Jerika entered hospice after a lifelong fight against Spinal Muscular Atrophy Type 2, an incurable and progressive disease that robbed her of ever walking in her life and caused continual pain.
Jerika only had movement in her head and hands. She made peace with dying, knowing that to continue would mean greater hurt, loss of her already limited function and still more operations. But it was no quick or easy decision, she said earlier this summer, mostly in recognizing the grief her mother would experience, reports USA Today.
"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."
While Jerika's decision to end treatment and celebrate through a special prom in July drew an outpouring of affection throughout the United States, 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."
Their strong mother-daughter bond, and the emotion of determining how to say goodbye, gained support from many people on 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.
Jerika never wavered in her decision, but instead focused on a having a full summer with friends and family.
Jen, a nurse and single mom, stayed busy with plans for the prom, dubbed "J's Last Dance." More than 1,000 well-wishers flocked 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.
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. Jerika understood early in her childhood 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.
Jerika also received support from celebrities. George Takei, former "Star Trek" actor, on Facebook in August stated of her: "She will forever dance among the stars, and in the hearts of many."