Courtesy of USA Today
A courageous teen girl with an incurable genetic disease is making the difficult decision to end her short life after one final summer of memories.
A courageous teen girl with an incurable genetic disease that often results in death before adolescence is making the difficult decision to end her short life after one final summer of memories.
14-year-old Jerika Bolen has lived with Spinal Muscular Atrophy for her whole life, so she says the decision to pull the plug on the ventilator that keeps her breathing this August was one she’s thought long and hard about well before she shared her wishes with her mother a few months ago. “When I decided, I felt extremely happy and sad at the same time,” she told USA Today. “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.”
Jerika’s disease has landed her in operating rooms over 30 times, causes her chronic pain and continues to weaken her body. She is unable to stand or walk and has fought to stay alive as her condition worsens by the day. Although she admits it’s emotionally devastating to know that her daughter has decided that she no longer wants to live, Jerika’s mother Jen says she supports her decision and has been preparing for this day. “If she’s at peace with it, I have to find a way to make peace with it,” Jen said.
Meanwhile, Jerika has found peace with being able to pass on her own terms and is making the most of the summer. She’s picked out a greenish-blue dress that she’ll wear to attend a prom celebration where the entire community is invited on July 22. Jen has pulled out all the stops to make sure Jerika’s prom is unforgettable and credits Jerika with giving her strength as their family prepares for August. “I’m strong because of her, that’s for sure,” Jen said. “It’s just we know we’ve literally done everything we can do.”
While she continues to hope for a miracle of either Jerika changing her mind or the discovery of a cure within the next month and also acknowledges the thoughts of those who feel Jerika is too young to make such a huge decision, Jen maintains her support of her daughter’s choice. “I know she’s only 14, but she’s old enough to decide,” Jen said. “It’s her body and it’s her pain.”
As for Jerika, she’s continuing to keep a joyful mindset right to the very end and relish in what she believes is her God-given strength.
“I try to be as happy as possible,” she says. “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.”
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