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Words of Hope: 13-Year-Old Writes About Her Illness to Inspire Others
September 9, 2016 | Nicole Hurley; excerpted from Thrivent magazine
Not that long ago, Thrivent member Lily Pederson of Springfield, Ohio, loved riding her bike, blowing bubbles and playing on swing sets with her sister, Kate. But that all changed shortly after her 10th birthday.
Suddenly, Lily found herself extremely tired. She began experiencing severe pain in both of her legs and developed an unusual sensitivity to light.
What the doctors originally mistook for mono was actually an uncommon and chronic disorder – Postural Orthostatic Tachycardia Syndrome, or POTS, which causes an abnormal heart rate when the body changes position.
"It was scary," Lily recalls. "Suddenly, I didn't know where I'd end up."
Lily's sickness forces her to take more than 20 pills a day and to stay home from field trips, birthday parties and holidays with family. Last school year, she missed 135 days of class.
Wanting to help others understand POTS, Lily wrote a book called My Life with POTS, and Kate illustrated it.
Lily's family used a Thrivent Action Team to raise money to help publish the first 100 copies. Matt Buehrer, the Pedersons' Thrivent Financial representative, personally donated enough money for another 250 to be printed.
"When I see Lily, I see someone who's had to grow up very fast," Matt says. "In spite of her illness, her maturity, compassion and care for others is beyond inspiring."
So far, about 1,000 copies of Lily and Kate's book have been distributed to doctors' offices locally and nationwide. Donations from the book's distribution have raised more than $4,000 for POTS research.
Lily, now 13, manages a POTS teen support group on Facebook. She attended a POTS conference last summer in Washington, D.C., where she also lobbied Congressional representatives to call attention to the disorder. She helps her mom run the website, StandingUptoPOTS.org.
Through all of the pain and fatigue, Lily constantly reminds herself and those around her to keep smiling.
"When you stay positive, you'll eventually find that piece of the puzzle that clicks," she says. "If you have POTS, hang in there. I'm not alone and neither are you."
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