Event to help Springfield girl battle POTS disease

We seldom think of ourselves in such terms, but biologists describe us as social animals, and they have a strong case.

Because in addition to constantly dragging around orange barrels to rebuild the transportation systems that connect us, we busy ourselves building and repairing the friendships and relationships that make up the connective tissue of our social lives, what we call our circles of friends or communities.

Those who want to support one of those ongoing efforts can run or somehow otherwise support the Stand Up To (Run For) POTS 5K, which will begin at 10 a.m. Saturday on Alumni Way near the Benham-Pence Student Center at Wittenberg University. Same day registration beings at 9 a.m. For details, go to cantstoprunningco.com or email tignorr@wittenberg.edu.

Ria Tignor, a 2011 Kenton Ridge High School graduate, is trying to pull the event together on a short time schedule so she can make it part of her career at Wittenberg.

One of her larger purposes is to help Lily Pederson, whose mother, Cathy, is a biology professor at Wittenberg. Tignor has known Lily since she was a small child charming the congregation at First Lutheran Church by playing the violin at services.

“You never expect things to happen to little kids,” Tignor explained. “In my eyes, she’s still the little girl I met when she was 4. Now she’s 13.”

Three years ago, she was diagnosed with POTS, a syndrome whose medical sounding name describes the single symptom everyone who has it shares: A tendency for the heart rate to race ahead if they move to a certain static upright posture for more than a few minutes.

I wrote about Lily and POTS couple of years ago, and couple of things bear repeating. Cathy Pederson adopted Lily in 2003 and Kate in 2008 from orphanages in Central China. Lily’s symptoms appeared three years ago after a bout with mononucleosis.

During a second time around working on this story, a couple of things have struck me:

First, POTS is classified under an umbrella of syndromes that involve the failure of our body’s autopilot system to properly run the physical functions that allow us to live normal lives.

Second, any time an ailment is described as being “under an umbrella” of ailments, the most solid piece of knowledge researchers possess is that those under the umbrella are aware that when it rains, it pours.

When I wrote about her two years ago, doctors were trying to help Lily’s quality of life by prescribing 20 pills a day and having her drink plenty of water to maintain her blood pressure.

Back then, Lily also demonstrated an artfulness in describing her struggles. Her likened her pain to porcupine quills piercing her legs; wrote that in the presence of constant exhaustion she’s always “trying to think through goopy mud;” and said that sitting in her wheelchair for countless visits to doctors makes her feel “like an animal in a cage being transferred to a different zoo for help.”

Just as the earlier strategy didn’t yield results, a recent strict exercise regimen has “ground her into the ground,” said Cathy Pederson, channeling her daughter’s way with words.

The approach has so sapped Lily’s energy that she can attend Northwestern Middle School just one period a day.

“We wanted to do something” to raise awareness of the syndrome shared by more Americans than the better known ailments Multiple Sclerosis or Lou Gehrig’s disease,” Cathy Pederson said, “but I’ve got a lot on my plate.”

Enter our connective social tissue.

In the course of working with pre-health profession majors at Wittenberg, Cathy Pederson often uses aspects of Lily’s physical challenges when relevant.

Again, it’s a connection thing: “It means more to the students because it’s someone real.”

Concluding Lily might also be someone to help, the students discussed trying to help her, through social connections. Through that process, the word got to Tignor.

A senior political science major, she also is president of the Health Education and Resource Team, a club who’s “Stall Street News” provides students in temporary captivity in the bathroom with information on how to stay healthy through the college years.

It also holds events like “De-stress Fest” and “Mid-Semester Madness” to help relieve the pressure of exams. “I find the more childish the activity is, the more college kids love it,” Tignor said.

When the idea of a benefit 5K arose, “I just kind of took it and ran with it,” said Tignor, whose pun was unintentional but should provide friends with an opportunity to solidify their social connections with her through the well-known human practice of razzing.

Tignor used all her social contacts, successfully appealing to the Tiger Fund for $2,500; using her Springfield firefighter father’s connections to get support from his friends; getting a Thrivent grant with Pedersen’s assistance.

“By the time she contacted me, she had the whole plan worked out,” said Pederson. And when Tignor asked what she thought of it “I said, ‘that’s awesome.’ ”

While others are welcome to take their children along on a one-mile fun walk, Kate Pederson, Lily’s sister and strongest supporter, “is running to win her age group,” Cathy Pederson said.

Tignor, meanwhile, has two goals in mind.

While “seeking to help Lily find a cure and live a happy life,” she said, “I want to help bring the community together. My goal (in the 5K is to) bridge the gap between the Springfield and Wittenberg communities” and, in a community that faces significant challenges of its own “start the process of making people proud to be from Springfield.”

Whatever progress she makes on that front, there’s one mother who will be particularly pleased with the efforts.

“We’ve taken Lily to all the doctors we can think of, and she’s not feeling any better than she did three years ago,” said Cathy Pederson. “There’s such a feeling of helplessness.”

And that leads us to one of the truly good things about social animals like us: We have an instinct for knowing how to help and comfort one another.

Thank you for reading the Springfield News-Sun and for supporting local journalism. Subscribers: log in for access to your daily ePaper and premium newsletters.

Thank you for supporting in-depth local journalism with your subscription to the Springfield News-Sun. Get more news when you want it with email newsletters just for subscribers. Sign up here.