A Wisconsin teenager suffering from an incurable genetic disease has been named prom queen at a dance held in her honor.
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.
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Jerika Bolen, 14, was able to live out one of her dreams by being crowned prom queen at a special dance in her honor
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.
Jerika Bolen, 14, who has Spinal Muscular Atrophy Type 2, with some school friends from Janet Berry Elementary at her prom night in Wisconsin
Jerika Bolen is escorted to the dance floor during ‘J’s Last Dance’ by her mother, Jen
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?'”
Jerika (pictured, surrounded by her friends) made her decision to die after her most recent surgery, which left her with pain that had become too much to bear
Jerika was named prom queen at her dance in Appleton, Wisconsin, and was even her own sash and tiara to wear
‘I kind of realized 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.
A number of friends and family brought flowers to the event for Jerika Bolen, who has Spinal Muscular Atrophy Type 2
Hundreds of people packed into the Grand Meridian in Appleton, Wisconsin, for the special event on Friday
Jerika Bolen is pictured on the dance floor with friends at ‘J’s Last Dance’ – an event held for her by supporters from across the country
The green balloon attached to Jerika Bolen’s chair can be seen high above the packed ballroom on Friday night
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.
Jen Bolen (right) said she believes her daughter’s story will have a lasting impact on the world and will leave a ‘legacy’
The Grand Meridan in Appleton was decked out in black and lime – just as Jerika wanted, and there was a massive dance floor for her and her friends to enjoy
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 realize what it takes to keep her alive.’
Jerika Bolen, 14, suffers from Spinal Muscular Atrophy Type 2, an incurable genetic disease that causes muscles to waste away. After years of chronic pain, Jerika has decided to end her life
Jerika, pictured with her mother Jen, said she knew after her most recent operation that the physical pain was too much to bear, and that she wanted to be taken off her ventilator at the end of August
Jerika, who was diagnosed when she was eight months old, has had more than 30 operations and spends 12 hours a day on the ventilator. She now only has enough physical strength to control her power wheelchair
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.
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
Jen and her family have tried to give Jerika as normal a life as possible as she battles through the pain
Jerika said she felt both ‘extremely happy and sad’ when she made her fateful decision.
‘There were a lot of tears, but then I realized I’m going to be in a better place,’ she said.
‘And I’m not going to be in this terrible pain.’
Jerika received treatments for years that extended her life. Jen said she was a ‘happy girl’ despite the fact that she ‘never crawled, walked or rode a bike’
But after a summer of dancing, fireworks and sleepovers, Jerika is ready to let go. ‘There were a lot of tears, but then I realized 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.’