A 14-year-old girl is living out her summer dreams after choosing hospice over surgery and telling her mother that she is ready to die. Jerika Bolen, who has Spinal Muscular Atrophy Type 2— which is often fatal for patients in adolescence— is in constant chronic pain, the Post-Crescent reported.
“When I decided, I felt extremely happy and sad at the same time,” Bolen, of Appleton, Wisc., told Post-Crescent. “There were a lot of tears, but then I realized 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.”
Bolen uses a power wheelchair and has control over her brain, eyes, nose and mouth but has trouble swallowing. She has slight control over her hands and arms but relies on constant care for everything else and uses a ventilator to breathe for 12 hours per day. She’s had more than 30 surgeries since being diagnosed at just eight months old, with her muscles further deteriorating after each procedure. The medication she takes to keep the pain at a level 8 out of 10 has also damaged her body, the Post-Crescent reported.
At the end of August, Jerika has instructed her mother, Jen Bolen, to pull the plug on the ventilator. Neither know how long it will be before she dies, but Jen hopes that it’s not too many days. She told the Post-Crescent that she has had to explain the difference between assisted suicide and her daughter’s decision to many people.
Bolen’s doctor, Kari Stampfli, director of the pediatric palliative care program for UW Health in Madison, told the news site that for patients with spinal muscular atrophy the standard of care is often comfort measures from the beginning and that there’s always the option to stop if it isn’t offering an improved quality of life.
“If she’s at peace with it, I have to find a way to make peace with it,” Jen told the Post-Crescent. “I know she’s only 14, but she’s old enough to decide. It’s her body and it’s her pain.”
For now, Jen is focused on spending the summer fulfilling her daughter’s wishes, which include trips to the movies, fireworks with her grandparents, sleepovers with friends and a community-wide prom. Appleton’s Grand Meridian will host the event July 22, and Bolen has chosen a green-blue dress for the dance, according to the report.
“I’m super happy,” she told the Post-Crescent. “And I don’t have to think about anything bad at the moment.”
Bolen told the Post-Crescent that she was ready to choose hospice after a surgery last year made her pain worse.
“After that surgery – it didn’t work and my pain got worse – I kind of sat down and thought, ‘Am I doing this for me or for my family?’ I kind of realized I was doing it for my family,” she told the news site.
Bolen has asked that after she dies people check in on her mother like “a baby,” to make sure she is eating, sleeping and getting out of the house. She told the Post-Crescent she knows her decision will leave her loved ones reeling but that she also knows it’s the right one.
“I try to be as happy as possible,” Bolen told the Post-Crescent. “I know I can’t always be happy every day. I still wonder why God picked me to have this disease and I know I can never know the reason. Maybe because I’m strong, I guess.”