Heartbreaking: 14-Year-Old With Degenerative Disease Explains Her Choice to Go Off Life-Support Next Month

Heartbreaking: 14-Year-Old With Degenerative Disease Explains Her Choice to Go Off Life-Support Next Month

Jerika Bolen has grace and wisdom far beyond her age.

Published July 15, 2016

Jerika Bolen, a 14-year-old Wisconsin native who suffers from an incurable genetic disease called Spinal Muscular Atrophy Type 2, has elected to end her life at the end of this summer. The young girl has bravely decided that she no longer wants to suffer through a life that has already included over 30 operations, entire days hooked up to a ventilator, and constant nurse presence.

Bolen was diagnosed at only eight months old, and as the symptoms worsen over time she now only has physical strength in her hands. For her, the physical pain and the pain of being unable to live a normal life has proven too much.

It was after her most recent operation that the young teen knew the pain had become too much to bear. She told The Post-Crescent, "I was ready then. I was ready a long time ago." After she got her spine fused, she asked herself, "After that surgery... I kind of sat down and thought, 'Am I doing this for me or for my family?' I kind of realized I was doing it for my family."

Her mother promised that she would honor her daughter's wishes. "She had endured more in her 14 years of life than most adults will ever have to. She's old enough to decide. It's her body and it's her pain."

Jerika has endured countless treatments to try to extend her life and improve her quality of life but as she has aged her pain has only increased. She suffers from persistent ache, and the painkillers she takes no longer have the effect they once did. 

As Jerika's mother comes to terms with the fact that her daughter will soon be gone, she has switched her focus to giving her daughter the summer of her dreams.

Jerika has requested a prom, called "J's Last Dance." The entire community has been invited for cake and dancing to celebrate the teen's life. This summer for Jerika is all about happiness and enjoying life. "I don't have to think about anything bad at the moment," she said.

After the summer, Bolen will go off her ventilator, and while it is impossible to know just how long she will last without it, her mother hopes that she doesn't endure much pain.

Jerika said she felt both "extremely happy and sad" when she finally made her decision. "There were a lot of tears, but then I realized I'm going to be in a better place," she said. "And I'm not going to be in this terrible pain."

Still, though, Bolen has tried to stay as positive as possible through all the pain. "I still wonder why God picked me to have this disease and I know I can never know the reason," she said. "Maybe because I'm strong, I guess."

Written by Evelyn Diaz

(Photo: Jerika Bolen via Facebook)


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