So Sad: 14-Year-Old Who Suffers From A Rare Disease Has Chosen To End Her Life After One Final Summer
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A 14-year-old girl named Jerika Bolen is ready to die after living with Spinal Muscular Atrophy Type 2 - which is often fatal for patients in adolescence. The disease keeps Jerika in chronic pain, the Post-Crescent reported.
The teen has decided to go on hospice and live out her final wishes over the summer including having a prom July, 22, 2016, at the Grand Meridian in Appleton.
She’s mostly immobile and knows her already chronic pain – a seven on a scale of one to 10 on her best days, she says – will only grow worse. She was ready to go a long time ago, according to the Post-Crescent.
She's at peace with her decision, she said, but heartbroken for those who’ll grieve her death, expected to come by late summer.
“When I decided, I felt extremely happy and sad at the same time,” she said.
“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.”
Jerika and her mother, Jen Bolen, made arrangements for hospice care in early June, and Jerika will go without the ventilator that now 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.
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. Jerika said the aching is persistent, and she feels sharp, sudden pains. Though painkillers ratchet down the intensity, she only takes them when the pain moves into the eight-to-10 range on the scale.
The medications that keep the pain at bay have damaged her body; the really tough days are becoming more frequent.
Jerika said there’s peace in being able to confront the inevitable on her own terms. Is she scared?
“A little bit,” she said, “but in knowing my doctors for so long, I’m pretty sure they’ll take good care of me.”
Jen, a single mom who works as a nurse for ManorCare Health Services in Appleton, had long promised to stand behind Jerika’s wishes when the pain became too much. Knowing the conversation would eventually arrive made the words no easier to process – but a promise is a promise.
“If she’s at peace with it, I have to find a way to make peace with it,” Jen said.
According to the Post-Crescent, 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. Last year’s surgery was a turning point that guided her hospice decision.
“I was ready then,” Jerika said. “I was ready a long time ago, but I kept going. 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.”
Read the full story over at the Post-Crescent.
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