One last dance. A 14-year-old Wisconsin teen with an incurable genetic disease celebrated her incredible life with her local community at a prom thrown in her honor, just one month before she plans to enter hospice care.
Jerika Bolen — who suffers from spinal muscular atrophy, a condition that has essentially left her immobile after damaging her muscles — showed up to the celebratory event on Friday, July 22, in a turquoise mermaid gown with “her usually purple hair dyed a similar shade,” according to the New York Daily News. She was escorted in a stretch limo by local first responders.
Earlier this summer, the Appleton resident told her mother, Jen Bolen, she was ready to die. She told the The Post-Crescent on Sunday, July 24, that she’s at peace with her decision, but is “heartbroken” for her close friends and family who’ll grieve her untimely passing.
“When I decided, I felt extremely happy and sad at the same time,” she explained to the local newspaper. “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. I’ve been working on it and thinking about it for way longer than anyone else has.”
Last month, Jerika and her mom made arrangements for hospice care. The ventilator she relies on for 12 hours a day to help her breathe will be pulled at the end of August and she’ll be put on morphine.
The teen says she is almost always in chronic pain in her hips and back, in addition to getting nerve spasms and having weak bones.
Thankfully, Friday night’s prom helped Jerika take her mind off her daily battle. “I’m super happy and I don’t have to think about anything bad at the moment,” she told The Post-Crescent of the celebration, where she later won the coveted title of prom queen.
“I try to be as happy as possible,” Jerika explained to the news outlet on Sunday. “I know I can’t always be happy every day. I still wonder why God picked me to have this disease and I know I can never know the reason. Maybe because I’m strong, I guess.”
During her fight, Jerika has been in operating rooms more than 30 times for countless surgeries, but she has managed to stay determined through it all. Says her grandmother, Sue Bolen, “She’s a very unselfish little girl and she’s tougher than anyone I’ve ever known.”
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