Jen Bolen will never forget the day her daughter, Jerika, was diagnosed. The 8-month-old girl had spent five hours in an MRI scanner at Children’s Hospital of Wisconsin as doctors looked for what they believed could be a tumor on the baby’s spine causing a lack of movement that was progressively getting worse.
They didn’t find a tumor, but they did find that Jerika had an incurable genetic disease: Spinal Muscular Atrophy Type 2.
Symptoms typically begin to appear in babies with Spinal Muscular Atrophy (SMA) Type 2 anywhere from 6 to 18 months in age. The disease affects the part of the nervous system that controls voluntary muscle movement, causing the muscles in limbs to waste away and severely reduces life expectancy. SMA can claim the lives of children as young as 2 years old.
The prognosis Jen Bolen received that day for Jerika was grim, but the single mother and nurse was not going to surrender and pledged to fight for her daughter's life.
“I refused to listen to that doctor tell me I was going to lose the best thing that ever happened to me,” she writes on a GoFundMe page detailing her journey.
She immediately threw herself into research, leading her to a specialist in Madison, Wisconsin, about two hours from their Appleton home, who would prove to be vital in bringing Jerika and her family all of “these extra years we have had,” Bolen wrote.
Over the years the disease was relentless and the pain and suffering for Jerika continued to worsen. Now, at 14, she is left with nearly no mobility, only being able to move the tips of her fingers.
After countless surgeries hoping to bring some sort of relief, the results were never enough. With every surgery, Jerika lost strength and the burden of chronic pain became too much to bear.
“The last big surgery I had, I was ready,” Jerika said in an interview with the Post Crescent. “I didn’t want to do that surgery, but I did it for my mom and my family, because it’s tearing them apart. It’s making them really sad that I’m going on hospice, they’re really going to miss me.”
Jerika knew it was time, so she garnered the courage to tell her family she wanted to go to a better place. She needed to go to a better place.
“I think somewhere in the back of my mind I knew it was coming,” Jen Bolen told the Post Crescent. “But I don’t know how to stop fighting for her, that’s all I’ve done since the day she was diagnosed.”
Ultimately Jen Bolen knew she had to find peace with her daughter’s decision.
“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.”
The family made the preparations for hospice care, and Jerika will be removed from her ventilator in late August.
During her final summer, Jerika has one experience she still wants to live out before saying goodbye. She wants to have a prom. A night of freedom and “music and dancing and fun.”
“She wants a disco ball and black and lime green decor and to be surrounded by lots of friends she has been unable to see for a long time,” the family writes on GoFundMe.
The family set up a GoFundMe page in hopes of getting the help to be able to make Jerika’s "last dance" at prom night “as pleasant and magical as possible.”
Jerika’s biggest worry isn’t on her own death, but instead ensuring her family will carry on and find happiness without her. “She always says I’m what she lives for,” Jerika said of her mother in the interview with the Post Crescent. “So if I’m gone?”
In the interview, she tells her mom all of the dreams she has for her after she is gone, to which she responds, wiping away tears, “I will do all of the things that you’re telling me to.”
“It’s going to hurt my family,” Jerika tells the Post Crescent. “But they will… They eventually will be okay … And my memory will carry on.”