Rare Disease Report

Teenage SMA Patient Who Wanted to End Her Life, Goes Through with Plan

SEPTEMBER 26, 2016
Andrew Black
On Thursday September 22nd, Jerika Bolen quietly passed away at the Sharon S. Richardson Hospice in Sheboygan Falls, Wisconsin.
She was 14-years old.
 We’ve kept up with the story of Jerika Bolen, a young teenager living with Spinal Muscular Atrophy (SMA) who, this past summer made the decision to stop living with the immense pain and began to plan her own death.
Jerika followed through on her decision to enter hospice and end her lifelong fight against her disease.
She made peace in being able to confront the inevitable on her own terms. She knew that to continue would mean greater hurt, loss of her already limited function and still more trips to the operating table.
She had endured more than 30 surgeries for her condition since being diagnosed at 8 months of age. Her family made it possible for her to enjoy movies, fireworks, sleepovers and a lot more.
Before her death, Jerika received her last wish of experiencing a prom. She got to be with her friends and schoolmates as she met her favorite band and YouTube celebrity while dancing the night away.
Jen Bolen, Jerika’s mother understood her daughter’s decision, and had prepared herself for several years to stand behind her when the time finally came to pull the plug, but it was a process easier said than done.

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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