APPLETON, Wis. — Disability rights groups said Thursday they have asked child protective services to intervene in the case of a severely disabled Wisconsin teenager who suffers chronic pain from her disease and wants to die.
Jerika Bolen, 14, who suffers from Type 2 Spinal Muscular Atrophy, garnered widespread attention earlier this year by speaking openly about plans to end her life. Her final wish of a prom dance drew more than 1,000 people in her hometown of Appleton.
Bolen said that because of her severe pain and the degenerative nature of her disease, which has confined her to a wheelchair, she would stop using the ventilator that aids her breathing in September.
Bolen's mother, Jen, could not be reached for comment, but she told the Appleton Post Crescent in July she had reluctantly accepted her daughter's decision.
“If she's at peace with it, I have to find a way to make peace with it,” she said.
However, several disability rights groups have voiced concern, arguing that Bolen's case should be treated as one of suicide prevention because her disease is not terminal.
They also question the pain management care Bolen has received.
“This is a child protection issue,” said Carrie Ann Lucas, founder of Colorado-based Disabled Parents Rights.
“We're talking about a 14-year-old child. It's a difficult time in most people's lives. She has her whole life in front of her. She should be going to college. She should be having a career.”
