Jerika Bolen, 14, is enjoying her final summer, fulfilling lifelong wishes after telling her mother Jen to unplug her life-sustaining ventilator at the end of August. Bolen, who spends her days in unbearable pain, has opted to forgo yet another surgery for Spinal Muscular Atrophy Type 2 disease. This muscle-wasting degenerative disease has nearly crippled Jerika’s body while destroying her quality of life.
Once the teenager’s ventilator is unplugged, mother Jen hopes her daughter’s last days will end as painlessly as possible. Jen told the Post-Crescent she’s had to explain the difference between assisted suicide and her daughter’s choice to many people.
Jen Bolen said the following according to the Daily Mail.
“If she’s at peace with it, I have to find a way to make peace with it. 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.”
According to Fox News, while Jerika Bolen has spent her last summer on Earth sleeping over with friends, shooting fireworks with Grandparents, and dancing, she says it’s her decision to go on to a better place come August’s end.
“When I decided, I felt extremely happy and sad at the same time. 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 must use a power wheelchair and only has control over her brain, eyes, mouth and nose. She has almost no usage of her hands and arms and relies on constant care for all other tasks.
While Jerika has undergone over 30 surgeries in 14 years, she relies on a ventilator to breathe for 12 hours each day. Following her succession of surgeries, Jerika’s condition has only worsened. Furthermore, the medication she takes to keep her pain at a level 8 of 10 has caused great damage to her.
Jerika was diagnosed with Spinal Muscular Atrophy Type 2 disease at eight months. The disease affects the nerves that control voluntary muscle movement, while generally resulting in early death.
However, upon learning of her daughter’s condition, Jerika’s mother, a nurse, refused to concede. She began thoroughly researching the disease, desperately searching for stories of hope. When Jen had established a support system with other families struggling with this malady, she was put in touch with Dr. Kari Stampfli.
Dr. Stampfli serves as the Director of the Pediatric Palliative Care Program at the University of Wisconsin. Together Jen Bolen and Dr. Stampfli put together a program that greatly extended and enhanced the quality of Jerika’s life.
Unfortunately, the treatments only lasted so long. Now Jerika, who has never walked, suffers from increased pain and greater lack of mobility. Dr. Stampfli told the Daily Mail: “Treatment for spinal muscular atrophy is always about comfort from the very beginning, and the option to stop is always there if it isn’t offering the quality of life that was hoped.’
Dr. Stampfli admitted that every conceivable option for treating Jerika had been exhausted.
“There is no doubt they’ve turned over every stone and tried every treatment for her. But we really haven’t been able to help her pain.”
Mother Jen echoed these statements, saying: “We know we’ve literally done everything we can do. People don’t realize what it takes to keep her alive.”
Jerika said after her final surgery she knew her decision was made.
Prior to her final wishes being fulfilled at the end of August, Jerika Bolen will have a special night dedicated to her. Her hometown of Appleton, Wisconsin will hold a community-wide prom in her honor on July 22.
Jerika is already excited for the event, as she’s picked out a beautiful green-blue dress for the occasion.
[Photo by creative stock/AP]