Disabled rights groups seek to stop teen’s planned death

Disability rights organizations have asked child protection officials to prevent a Wisconsin teenager from going without her ventilator and ending her life.

Jerika Bolen, 14, suffers from spinal muscular atrophy type two. The incurable disease destroys nerve cells that control voluntary muscle activity. Jerika’s movement is mostly limited to her head and hands, and she says she’s in constant pain. Her mother, Jen Bolen, agrees with her daughter’s wishes to enter hospice care.

Jerika’s decision to end her life attracted widespread attention, including on social media. More than a 1,000 people attended a prom thrown in her honor in July at a ballroom in Appleton as a last wish. She received cards and gifts from around the world when her story became known.

Disabled Parents Rights, along with several other groups, have asked Outagamie County child protection services to step in, according to Carrie Ann Lucas, executive director of the Windsor, Colorado-based organization.

Lucas said Jerika needs intervention, not assistance in ending her life.

“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,” Lucas said Wednesday.

Outagamie County’s Children, Youth and Families Division declined comment on the organizations’ request, citing privacy in child welfare cases.

Lucas said her group has no legal standing to stop Jerika and that she had not heard from child protection services.

In a July interview, Jen Bolen said those critical of Jerika’s decision fail to understand the depth of medical intervention it’s taken for her to reach her teenage years.