Jerika, her family and friends are finding ways to process what’s going to happen in the coming weeks and celebrate the life she’s lived so far.

But single mum Jen Bolen is facing this difficult reality at the moment.

After years of suffering with chronic disease, her 14-year-old daughter Jerika has made the decision to end her own life.

Jerika Bolen uses a motorised wheelchair to get around. Picture: YouTube/USA TodaySource:Supplied

Jerika has spinal muscular atrophy (SMA) type 2.

It’s a rare, progressive, incredibly painful, incurable disease that Jerika’s been living with since she was a baby, diagnosed when she was just eight-months-old.

Life expectancy for those with SMA type 2 is usually just a few short years, as the condition affects the respiratory system. Jerika’s thumbed her nose at those odds — a testament to her general feisty, convention-defying spirit.

SMA causes chronic muscle weakness and mobility issues. Jerika — from Appleton, Wisconsin in the US — uses a motorised wheelchair to help her get around and a respirator to help her breathe. She is able to move parts of her face and her hands.

Jerika Bolen has been in and out of hospital since she was a baby. Picture: YouTube/USA TodaySource:Supplied

Jerika’s been down a hard road. She’s been in and out of hospital operating rooms more than 30 times. She’s had part of the heads of her femurs removed in an attempt to alleviate crippling hip pain and in 2013 she had her spine fused in another attempt to get on top of the agony.

“There is no doubt they’ve turned over every stone and tried every treatment to make things better for her, but we really haven’t been able to help her pain,” Kari Stampfli, director of the paediatric palliative care program for UW Health in Madison told Post Crescent.

“I was ready a long time ago, but I kept going,” Jerika said of her decision to end her life.

“After that (the spinal) 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,” Jerika confessed.

“The last big surgery I had, I was ready for hospice. I didn’t want to do surgery, but I did it for my mum and my family,” she told USA Today.

“I realised, ‘Jerika, what is your quality of life right now? This is enough pain. I don’t need this anymore. It’s not fair’.”

Jerika’s acutely aware of the implications and how difficult it is for her family and friends to come to terms with her choice.

“It’s tearing them apart, it’s making them really sad that I’m going on hospice. They’re really going to miss me.”

Jen Bolen and daughter Jerika are coming to terms Jerika’s decision. Picture: YouTube/USA TodaySource:Supplied

“Its going to hurt my family, but they eventually will be okay and my name and legacy will be, my memory will carry on, I hope,” Jerika said.

“When I decided, I felt extremely happy and sad at the same time,” she told Post Crescent.

“There were a lot of tears, but then I realised I’m going to be in a better place, and I’m not going to be in this terrible pain. I’ve been working on it and thinking about it for way longer than anyone else has.”

Jerika with one of her dogs.Source:Supplied

Jerika’s mum Jen — a single parent and nurse — spoke of her journey to come to terms with her daughters’ difficult decision.

“I think somewhere in the back of my mind I knew it was coming, but I don’t know how to stop fighting for her. That’s all I’ve done since the day she was diagnosed.”

“I know she’s only 14, but she’s old enough to decide,” Jen said. “It’s her body and it’s her pain.”

Jen had promised to stand by Jerika’s wishes should the pain ever become too much to deal with.

“If she’s at peace with it, I have to find a way to make peace with it.”

Jerika entered hospice in June, planning for one final summer doing things she loves and making the most of her time with her favourite people.

At the end of August, her ventilator will be removed and she’ll spend her final days at home surrounded by her family, friends and two puppies Tupelo and Julie.

Jerika, her family and friends are finding ways to process what’s going to happen in the coming weeks and celebrate the life she’s lived, so far.

Jerika’s last wish was to go to prom, so she and her mum are working on that together, organising an event at Appleton’s Grand Meridian which is taking place this evening.

‘J’s Last Dance’ currently has 262 guest RSVP’s on Facebook. Jen started a gofundme page with the hopes of raising $25,000 for the event — so far $32,357 has been donated by strangers.

There’ll be “dancing and lots of food, because I love food and lots of cake and MY type of music,” the teen said in an interview with USA Today.

“I just want to be happy and we’re all going to be together and dance and that’s all I want.”

This article originally appeared on Kidspot.