Allie Dama Affandy became sick in 2008 during the height of her gymnastics career at the University of Maryland. She was hospitalized for 48 days, had to undergo numerous tests, and suffered from a nearly fatal seizure before being given a kidney biopsy. The biopsy results helped doctors finally diagnose her with polyarteritis nodosa vasulitis (PAN), an illness typically found in older men.
"She didn't look sick that entire time and was even told that the symptoms were all in her head," said her sister, Katie Dama Jaskolski.
Two years later, Katie noticed back and stomach pain while training for a half marathon.
"Being an athlete, I was always taught to give my body rest if I felt pain and that's when everything backfired on me," Katie said.
Katie became sick and after seeing specialist after specialist she began experiencing the same thing as her sister Allie – her tests were coming back normal.
Finally, after seeing a 23rd doctor in Indiana, Katie was diagnosed with Ehlers-Danlos syndrome (EDS). EDS is "a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls," according to Mayo Clinic. Two days later the Cleveland Clinic diagnosed her with Dysautonomia.
It wasn't until Katie and Allie started to manage their invisible illnesses, that they came up with the idea to hold a fundraiser at Lou & Harry's. They sought to help raise awareness and show support for others in the community who may be going through the same thing.
The sisters garnered a huge amount of response during their event – raising more money than they could have imagined.
"People came up to us thanking us for bringing awareness to these invisible illnesses," Katie said. "That fundraiser was what opened our eyes and showed us that there is a place for something like this in our community."
The two started their 501(c)3 paperwork and created the Life as a Zebra Foundation.
This year marks the 5th anniversary of the foundation - to celebrate a gala and benefit concert will be held on Saturday, April 16th from 6 p.m. to 11 p.m. at the Kellogg Hotel & Conference Center in East Lansing, Michigan.
"It's hard to believe how much we've grown from our first fundraiser at Lou & Harry's to now, where we are holding it at the Kellogg and in the Big Ten room," said Katie. "It's very fulfilling to see how the foundation has helped others."
This years event will include a silent auction as well as feature singer-songwriter, Chris Trapper and speaker, Lisa Gigliotti.
The sisters have big dreams for this year's event.
"Last year we raised $10,000 for research on Dysautonomia at the University of Toledo Medical Center. This year we would like to surpass that amount and present it to them at this year's benefit."
Proceeds raised at this year's event will also support Life as a Zebra Foundation's projects and initiatives to educate, create awareness and support research for invisible illnesses.
"We always say everybody knows somebody with a story like this. There are so many of these illnesses that fall under the umbrella of invisible," Katie said. "Our goal is to bring visibility to these invisible illnesses."
To purchase tickets to the gala and benefit concert you can visit www.ZebraNation.org or go to the Greater Lansing Convention and Visitors Bureau. Tickets are $50. For more information on the Life as a Zebra Foundation and how you can donate outside of the event, click here or contact Katie Dama Jaskolski at katie@zebranation.org.
