APPLETON, Wis. — Disability rights groups are attempting to intervene in an Appleton teenager’s decision to cease medical treatment and die of the incurable disease that has racked her body and left her in constant pain.
Carrie Ann Lucas, executive director of the Colorado-based Disabled Parents Rights, said her organization is one of several that have asked for child-protection authorities to investigate the case of 14-year-old Jerika Bolen, whose decision to enter hospice care at the end of summer gained national attention.
“A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Lucas said Tuesday.
Jerika suffers from Spinal Muscular Atrophy Type 2. She and her mother, Jen Bolen, said earlier this summer that Jerika would go without her ventilator while under hospice care in early September, essentially scheduling her own death. Her story drew an outpouring of support when her family, friends and her care team held a prom, dubbed Jerika's Last Dance, in late July.
On Tuesday, Jen Bolen asked for privacy and declined further comment about her daughter's medical care.
Blom, director of Outagamie County’s Children, Youth and Families
Division, also declined comment on whether her office has received a
referral or opened an investigation, citing the confidentiality of
Jerika was diagnosed as a baby with Spinal
Muscular Atrophy, often referred to as SMA. The incurable disease
destroys nerve cells in the brain stem and spinal cord that control
voluntary muscle activity. Jerika has never walked, and today her
movement is mostly limited to her head and hands.
she’s in constant pain — about a seven on a scale of one to 10 on her
best days. She expressed concern that her pain and the need for more
invasive medical interventions would grow as her body continues to