Jerika Bolen, Teen With Rare Disease Who Wanted to End Her Own Life, Dies

Jerika Bolen, a 14-year-old girl with spinal muscular atrophy type 2 (SMA), died on Thursday after entering hospice care to end her own life.

With medical interventions, SMA – which causes muscle weakness, trouble breathing and feeding difficulties – is not fatal, although it is life-threatening. Bolen’s wishes to end supportive care, and thus end her life, sparked controversy after her hometown of Appleton, Wisconsin, threw her “one last dance” in July.

Disability rights advocates protested the teen’s decision, trying to convince Bolen, her family and child protective services that Bolen should not be allowed to die. “A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Carrie Ann Lucas, executive director of Disabled Parents Rights, told USA Today.

Despite letters and petitions, the Bolen family stood by the teen’s decision to end her life. Bolen, whose movement was limited to her head and hands, said, in previous interviews, she lived with constant pain and was afraid of any further medical interventions she might have required.

“My only words to anyone questioning this is that I love that girl with every cell in my being,” Bolen’s mother told USA Today-Wisconsin, on Thursday. “[N]o one in their right mind would let someone suffer like she was.”