One last dance: Teen with incurable disease crowned prom queen

A Wisconsin teenager suffering from an incurable genetic disease has been named prom queen at a dance held in her honour.

Jerika Bolen, 14, was able to live out one of her dreams before she chooses to die later this summer from illness.

Jerika was diagnosed with Spinal Muscular Atrophy Type 2 when she was only eight months old, and has endured more than 30 operations and spends 12 hours a day hooked up to a ventilator.

But the 14-year-old was the belle of the ball at "J's Last Dance" on Friday night, sharing an incredible moment with friends and family.

The Grand Meridan in Appleton was decked out in black and lime - just as Jerika wanted, and there was a candy buffet and cakes for everyone who attended the special night to enjoy.

But most importantly, there was a massive dance floor in the middle of the room where Jerika and her friends were able to laugh and have fun throughout the incredible evening.

To cap the unforgettable night off, Jerika was crowned "prom queen", and was even given her own sash and tiara to wear.

The 14-year-old made the decision to die after her most recent surgery, which left her with pain that had become too much to bear.

"I was ready then. I was ready a long time ago," Jerika told The Post-Crescent.

The teen had her spine fused, but her pain only got worse.

"After that surgery...I kind of sat down and thought, 'Am I doing this for me or for my family?''"

"I kind of realised I was doing it for my family."

Jen Bolen had long promised her daughter that she would honor her wishes to end the chronic pain that she must live with every day. But that hasn't made Jerika's choice any easier to swallow.

"If she's at peace with it, I have to find a way to make peace with it," she said.

"She has endured more in her 14 years of life than most adults will ever have to. She's old enough to decide. It's her body and it's her pain."

Jen said she believes her daughter's story will have a lasting impact on the world.

"She's making a legacy for herself. All these years, I wanted to scream it from the rooftops, and she's doing it," she told The Post-Crescent.

It comes after the single-mother detailed the battle they both have fought since the very first day Jerika was diagnosed.

"I refused to listen to the doctor tell me that I was going to lose the best thing that ever happened to me," she wrote on a GoFundMe page for Jerika.

Jen immediately began doing research, and found families raising children with the disease who were "living and happy".

She was put in contact with specialist Dr Kari Stampfli, the director of the pediatric palliative care program at UW Health in Madison, and together they worked to give Jerika the fullest possible life.

The treatments extended Jerika's life and Jen said she was a "happy girl" despite the fact that she "never crawled, walked or rode a bike".

But the pain has only increased as Jerika, who was once able to life her arms over her head, has gotten older.

She suffers from a persistent ache, as well as sharp pains that come suddenly. The painkillers she takes when it becomes too great have damaged her body.

"There is no doubt they've turned over every stone and tried every treatment to make things better for her," Stampfli told the Post-Crescent.

"But we really haven't been able to help her pain."

"We know we've literally done everything we can do," said Jen. "People don't realise what it takes to keep her alive."

As she comes to terms with the fact that she is losing her baby girl, Jen has become focused on giving Jerika the final summer of her dreams.

Hospice care plans have been put in place and Jerika will go off her ventilator in late August, at summer's end.

It's impossible to know just how many days the teen will be able to survive without it, but her mother hopes the pain doesn't last for long.

Jerika said she felt both "extremely happy and sad" when she made her fateful decision.

"There were a lot of tears, but then I realised I'm going to be in a better place," she said.

"And I'm not going to be in this terrible pain."

Just like she has through all her life, Jerika is still trying to remain as happy as possible through the pain.

"I still wonder why God picked me to have this disease and I know I can never know the reason," she said.

"Maybe because I'm strong, I guess."