In the Loop

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September 8th, 2015

The $1,700 Lemonade Stand

By In the Loop

When Sylvia Buchanan learned about Dr. Mauermann's research, she decided to help out by launching "her own fundraising effort — a lemonade stand in front of her North Carolina home.Sylvia Buchanan was around 4 years old when her parents, Debra and Chris, "noticed she couldn't pick up her left foot." That discovery started the family on a search to find answers that would lead them to Mayo Clinic, they tell our friends at Mayo Clinic Magazine. The family's quest began in their home state of North Carolina, where countless medical appointments (and accompanying tests) left the family no closer to understanding the cause. Doctors assured them that Sylvia's "overall health wasn't threatened and they shouldn't worry." But the couple wasn't content with that response, and Debra, a Minnesota native, suggested a visit to Mayo Clinic.

The family arrived in Rochester "with a stream of questions." And while Sylvia's care team, which included neurosurgeon Robert Spinner, M.D., and neurologist Suresh Kotagal, M.D., didn't promise a cure, they did promise an answer to the question of what was causing Sylvia's problem. "We hadn't heard that before," Chris says. "Having that attitude shared with us gave us a great comfort."

Sylvia Buchanan’s lemonade stand raised $1,730.60.A review of Sylvia's previous test results and some additional imaging yielded that answer: A "very small lesion was cutting off Sylvia's peroneal nerve from the lower part of her thigh." The condition, called intraneural perineurioma, is rare — only 175 cases have been documented worldwide. But Dr. Spinner and colleagues have published articles about it. And Michelle Mauermann, M.D., is part of a team conducting research to learn more about the condition, which currently has no cure. Because intraneural perineurioma is rare and not a life-threatening condition, however, it's "challenging" to find enough patients and funding to conduct research, Dr. Mauermann says.

When Sylvia learned about Dr. Mauermann's research, she decided to help out by launching "her own fundraising effort — a lemonade stand in front of her North Carolina home." Before setting up shop, she "wrote a letter explaining her condition and that doctors were researching a cure." Her mom emailed the letter to friends, family and neighbors, who turned out in droves on the day of the sale. That meant a lot of lemonade and "a sticky trail from the driveway all the way back to the sink," according to Sylvia's father. It also meant a tidy sum of cash: $1,730.60, to be exact.

We'd call that an unqualified success. But the Buchanan family would call it something else. "If something is especially good, we have a code word now," Debra told Mayo Clinic Magazine. "We say, 'It's Mayo."" (That sounds pretty Mayo to us.)

You can read more about Sylvia's story and Dr. Mauermann's research in the next issue of Mayo Clinic Magazine. Until then, refresh us with your comments below. You'll find social media tools atop this page to share this story with others.

Tags: Dr Michelle Mauermann, Dr Suresh Kotagal, Dr. Robert Spinner, Patient Stories, Pediatric Neurology

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KearstiAmelia
@kearstiameli

Posts: 1
Joined: Nov 02, 2016
Posted by @kearstiameli, Nov 2, 2016

I was also diagnosed with a perineurioma, May of 2015, by Dr. Michelle Mauermann. I went through countless amounts of testing at my home in Kansas with no answers. My neurologist at home then consulted the Mayo Clinic’s neurology staff to see me. I was told the same, no cures yet, or treatment. I hope that this changes!

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