Life definitely isn’t fair and some people truly get handed a bad deal.. This story of one Wisconsin teen came across my desk and my heart goes out to her and her family.. Nothing but heartbreak on this post..
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Appleton, WI – Jerika Bolen, 14, who was diagnosed with Type 2 Spinal Muscular Atrophy, 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.
But for her power wheelchair, Jerika Bolen is every bit an active 14-year-old girl – a hopeless romantic with shiny purple hair, a love of alternative music and an addiction to Facebook.
She has a maturity and wisdom that belies her age, and on a recent spring day, as other 14-year-olds were finishing their final year of middle school and making summer plans, Jerika told her mother she was ready to die.
The teen, who turned 14 just before Christmas, has Spinal Muscular Atrophy Type 2, an incurable genetic disease that often claims lives before adolescence. 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 says right now all she does is homework and lay down.. She’s incapable of doing much else.
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.
Once the ventilator is shut down, there’s no knowing how soon the end will come. Jen knows Jerika has a certain stubbornness built into her psyche – and though it’s long been to her benefit, she hopes her daughter’s fighting spirit will relent when it’s time.
“I hope it’s not more than a few days,” Jen said.
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.
Now she says she wants “to be happy and dance, that’s all I want.”
A GoFundMe has been started to make sure she has the best last dance ever.
Read More of this story HERE