Terminally ill US teen girl dies after enjoying last summer with family and prom dance

Wisconsin,Sept27:Fourteen-year-old Jerika Bolen’s prom night was one many girls would wish for — a brimming ballroom bathed in green and black embellishments with a queen to match, wearing a glimmering greenish gown, a tiara and a sash.

But for Jerika, it would be her last.

Jerika, from Appleton, Wis., had Type 2 spinal muscular atrophy, a condition that destroys the nerves that control muscle movement. She knew her fate — the disease most often robs its victims of life by adolescence. So she planned a magical summer, one filled with family, friends and a celebration dubbed “J’s Last Dance,” according to a GoFundMe page set up for the teen.

Then she planned to shut down the ventilator that was helping to keep her alive and slowly slip away from years of suffering.

Two months after people crowded into a ballroom to show support and say goodbye, Jerika died Thursday at a hospice center in Appleton, her mother told the Post-Crescent.

“My only words to anyone questioning this is that I love that girl with every cell in my being,” her mother, Jen Bolen, told the newspaper, “and no one in their right mind would let someone suffer like she was.”

When Jerika was 8 months old, she started losing her strength and mobility; she could no longer crawl or hold up her small body, her mother told the Post-Crescent.

Doctors diagnosed her with Type 2 spinal muscular atrophy. The condition,according to the Muscular Dystrophy Association, is “a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.”

Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells. Atrophy is the medical term for getting smaller, which is what generally happens to muscles when they’re not active.

SMA involves the loss of nerve cells called motor neurons in the spinal cord and is classified as a motor neuron disease.

Muscle weakness in the respiratory system is the most common cause of death with the disease, according to the association.

“When the respiratory muscles weaken, air doesn’t move into and out of the lungs very well, with subsequent adverse effects on general health,” it said. “Signs of weakening respiratory muscles are headaches, difficulty sleeping at night, excess sleepiness during the day, poor concentration, chest infections and, eventually, heart damage and respiratory failure.”

“I promised my child when it got to be too much I would be behind her no matter what,” Bolen wrote on the GoFundMe page. “She has endured more in her 14 years of life than most adults will ever have to. I am beyond proud of her for fighting so hard for this long and I am honored to be her mother.

“She has let me know now that she needs to be free of her broken body.”

But not everyone agreed with a young girl’s plan to end her life.

Jerika Bolen goes through the final stages of hair and makeup before her prom July 22, 2016, in Appleton, Wis. (Danny Damian/The Post-Crescent via Associated Press)

The Post-Crescent reported:

Jerika’s hospice decision didn’t come without controversy.

Those who’ve lived with the disease into adulthood were among the most vocal in expressing hope that Jerika would change her mind.

A video plea from Jordan Schroeter, a Grafton man with Spinal Muscular Atrophy, went viral.

“Please reconsider your decision,” he told her. “I know your pain and everything you’re talking about, but sweetheart, you have so much left to give.”

Adults with neuromuscular diseases engaged in a letter-writing campaign to the teen.

Others were more direct in their attempts to intervene. Five disability rights groups reached out to child protection authorities and asked for an investigation into Jerika’s care.

But Jen defended her daughter at every turn.

In July, more than 1,000 people who supported the teen’s right to die gathered at her prom — a rite of passage and way to celebrate a teenage girl remembered for her tenacious personality and punk-like style.

Jerika died Thursday at Sharon S. Richardson Hospice in Sheboygan Falls in eastern Wisconsin after her decision to stop medical treatment, her mother told the Post-Crescent.

The teen had told The Washington Post that she realized, “‘I’m going to be able to walk, I’m going to be with God, I’m going to be free.’”