Rare Disease Report

Teenage SMA Patient Ready to Pull The Plug

JULY 15, 2016
Andrew Black
As many rare disease patients are in a race with time hoping a cure is found before their disease takes away their lives, one teenage girl diagnosed with Spinal Muscular Atrophy (SMA) has come to peace with ending her life. 
 
Jerika Bole, a 14-year-old girl from Appleton, Wisconsin is just like every other teenage girl; rocking stylish purple hair and an addiction to social media. However, unlike most teenagers, Jerika has been in a powered wheelchair for the majority of her life, being diagnosed with Spinal Muscular Atrophy. While other teenagers her age set off to make summer plans, Jerika Bole has made plans to end her own life. With no bitterness towards the situation, Jerika is at peace with her decision. However, she feels bad for the people who will suffer grief of her decision. 
 
Jerika and her mother, Jen Bolen, made arrangements for hospice care in early June, and Jerika will go without the ventilator that currently assists her breathing for 12 hours each day. Jerika wanted a full summer, so the ventilator won't be pulled until the end of August. Once the ventilator is shut down, it is only a matter of time until her body will shut down too.
 
On a good day, Jerika will level her pain at a seven out of a scale one through ten. Jerika's pain is mostly felt in her hips and back. She gets nerve spasms and her bones are weak because she's never been able to get up and move. Still, it's been a difficult fight. Jerika has been in and out of operating rooms more than 30 times. Last year, she had the heads of her femurs removed in hopes of bringing comfort to her aching hips. In 2013, she had her spine fused.
 
When asked if she’s scared, she won’t deny that fear does tremble in her thoughts, but she is confident in her doctor’s caring abilities. Jerika’s wish is to die at home surrounded by her mom, extended families and two dogs.
 
In the meantime, Jerika is making the most out of her summer by having sleep overs and going to prom in late July.  
 
Jerika said there’s peace in being able to confront the inevitable on her own terms. While only 14-years-old, Jerika has shown great maturity in making such a big decision. 
 

Spinal Muscular Atrophy

SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier.
 


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