"Last dance"

14-year-old girl with rare disease makes difficult decision to schedule her own death

In her 14 years of life, Jerika Bolen has endured a mind-boggling 38 surgeries. Recently, Jerika reached the difficult decision to end her life. She’s been battling a rare terminal disease called type 2 spinal muscular atrophy. It’s incurable and most sufferers die at some point during adolescence.

The disease is so severe that, just to make it through her days, the Wisconsin teen must be put on life support. She spends at least 12 hours a day hooked up to a ventilator. Steel rods have been surgically implanted in her back to assist her in sitting upright, and she’s basically in constant pain, even though she’s on a steady regimen of painkillers, which her mother, Jen Bolen, says compromise her health due to the side effects.

After her 38th operation, which she said she didn’t even want to undergo in the first place, Jerika decided she could take no more. “I sat myself down and I thought, ‘Jerika, am I here for me or am I here for my family? I can’t even do anything besides lie in bed because I’m so sore.’” After that frank conversation with herself, she revealed to Jen, who’s a nurse and single mom, her fateful decision.

“I just kept going,” Jerika said. “I didn’t want to hurt my mom, I didn’t want to hurt my family. I wanted to keep fighting and keep fighting. I didn’t have a life. I was just laying on the couch, got up to do homework and then went back to bed because I was so sore.” Her mother found the decision to be a difficult one to accept. “I don’t know how to stop fighting for her,” Jen told a video crew from The Post-Crescent. “That’s all I’ve done since the day she was diagnosed when she was 8 months old.” In August, after one last summer, Jerika will go under hospice care and remove the ventilators, allowing herself to die. But not before she has one last wish fulfilled.

As heartbreaking as Jerika’s story is, there is a bittersweet aspect to it. “I’m having a huge prom,” she said in the video. The prom is taking place on Friday evening, July 22, and was organized by Jen. Jerika, who’s look is decidedly punk rock, will don a teal dress and along with friends go through the annual rite of teenage passage. Jerika is a huge fan of the band My Chemical Romance, so there will be plenty of their tracks on the evening’s playlist along with a few hit pop songs. She told The Washington Post she’s calling it her “last dance” and said, “I actually have a pretty girly dress, but I’m going to have punky jewelry. Just to keep my punk soul with it.” She added, “I just wanted to be happy and we’re all going to be together — and dance.”

Then next month, Jerika will say goodbye. She seems at peace the hard decision, though a distinct air of melancholy comes through in her words when she reflects on life for her family after she’s gone.

“They eventually will be OK, and my name and legacy and my memory will carry on … I hope.”

Read the full story at The Washington Post.

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