Jerika Bolen wakes up every morning with another day ahead of her hooked up to a ventilator and wracked by terrible pain, caused by an incurable illness that usually kills its sufferers when they're in their teens. But the purple-haired 14-year-old from Appleton, Wis., has decided to wrest control back from the Type 2 spinal muscular atrophy that's plagued her by ending her own life, and she's going to go out dancing, the Washington Post reports. On Friday she'll be donning a tulle dress and attending her prom, which she calls her "last dance"—and then, after spending one final summer with her mom, they'll turn off the ventilator that keeps her alive at the end of August. Jerika's mom, Jen Bolen, has been working furiously since Jerika was a baby to ease her daughter's agonizing pain, but even after 38 surgeries, it has become unbearable (usually at a seven on a one-to-10 scale on a good day). "I used my voice that I had and said, 'This is enough pain. I don't need this anymore," Jerika tells USA Today.
The director of the pediatric palliative care program at UW Health in Madison tells the Post-Crescent that even though the Bolens have "turned over every stone and tried every treatment to make things better for her … we really haven't been able to help her pain." Which is why Jen Bolen has come around to her daughter's decision, despite her own anger, sadness, and fear about what's to come. "I know she's only 14, but she's old enough to decide," Bolen says. "It's her body and it's her pain." She's put up a GoFundMe page to help raise money for Jerika's last days, which she hopes to make as "pleasant and magical as possible." "The first week, I was crying all the time," Jerika says of the days right after making her decision. "But after a couple days, I was running around so happy. I was like, 'I'm going to be able to walk, I'm going to be with God, I'm going to be free.'" (Five-year-old Julianna Snow also got her wish to die at home.)