Wisconsin teen with rare disability has decided to stop taking life saving measures.

Disability Activists Seek State Intervention To Stop Jerika Bolen, Teen With Rare Life-Threatening Disability, From Ending Her Life

Physician-assisted suicide is a topic the nation has struggled to agree on, and it is still without a concrete resolution within the eyes of the law. As such, the case of 14-year-old Jerika Bolen is one that has captivated the nation again in relation to the right to die. The teenager suffers from a rare disability and is choosing to die while disability activists are fighting to have the state keep her alive.

Appleton, Wisconsin, teenager Jerika Bolen first came into the controversial spotlight back in July when her decision to go into hospice care this September made headlines. Her choice included the decision to stop the use of a ventilator to keep her breathing — doing so would ultimately lead to her death. The disability that plagues Jerika is type two spinal muscular atrophy (SMA), and while the disability is not automatically fatal, it does cause life-threatening issues such as weakness of the muscles, breathing troubles, and difficulties eating. All of those side effects can be managed by modern medicine, but it is a life that Jerika Bolen does not want for herself.

Jerika Bolen, with the support of her mother, decided to bring an end to the multiple major surgeries, the endless pain in her body, and the around-the-clock care required to keep her in a life where she exists inside of a paralyzed and wheelchair-bound body. She was diagnosed as a baby and has never walked on her own, and the only control she has of her movements are her head and hands. The disease works by destroying the nerve cells in the brain stem along with those in the spinal cord that control voluntary muscle movement.

She is not going gently into the night, however, but instead has chosen to go out with a bang. The rebellious teen decided to throw herself a going away party and a chance to go to her prom, and she had the support of hundreds of people who have cheered the decision and even attended the prom she had in July. However, groups of disability activists are fighting to block the teenager’s decision, arguing that in a situation with a healthy teen, an attempt would be made to talk them out of committing suicide instead of celebrating it.

There are various disability activists and groups seeking the intervention of the state in the decision of Jerika Bolen to essentially commit suicide. Colorado-based Disabled Parents Rights spoke to the media through the executive director of the organization, Carrie Ann Lucas, and she said that groups continue to fight for child-protection authorities to step in and investigate the teenager’s story and intervene in Jerika Bolen’s plans to end her life.

Lucas also went on to say, “A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child.”

These disability activists are also asking Bolen to try and seek some counseling with the hopes of getting her to change her mind. The Disabled Parents Rights group posted a statement about their stance to their Facebook page.

“Any other teen wishing to die receives suicide prevention, not suicide assistance. If child protection is not involved in Ms. Bolen’s situation, despite statute and case law that is clear that it is unlawful for children to terminate medical treatment, she is a victim of disability discrimination in addition to the medical neglect.”

The Post-Crescent presents arguments in total opposition to the disability activists, even that the groups are simply using the case of Jerika Bolen and her decision to push their own agenda. The paper states that they would never have guessed that after they posted what they meant as a heart-warming story of bravery in the face of a lifetime of pain, the disability groups would then twist the story to fit their own narrative.

The groups — Autistic Self Advocacy Network, Disability Rights Wisconsin, Disabled Parents Rights, Not Dead Yet and NMD United, who focus on neuromuscular disorders — are the ones working to have the intervention and asked the state to also begin an investigation into the family for accepting the 14-year-old’s decision to end her life. The Post writer argues that the fight the family would be dragged into will only serve to make a very difficult time much worse and also more complicated than the one they are already going through.

The sentiments against the disability activists are shared by many. They believe the family should be left alone so that they may enjoy their last days together in peace and respect what must have been a difficult decision for all of them to accept, including Jerika Bolen, but she is the only one who should get to choose when the endless pain and need for a ventilator to breathe should stop.

Jerika wants to make her last days as memorable as possible.

[Image via Jen Bolen/GoFundMe]