A benefit is being held Saturday to raise money for research into Arterial Tortuosity Syndrome, a rare disorder. Collin Schmieding and others are raising money to go to Arkansas for genetic testing. From left to right are Todd Schmieding, Cailee Schmieding, Julie Zippay-Larson and Collin Schmieding. Still Moments Photography donated their time to take this family photo for the event. (Submitted photo)
6/25/2014 7:30:00 AM Benefit to be held to help Rhinelander man with rare disease
Kayla Breese Feature Writer
A benefit for Arterial Tortuosity Syndrome (ATS) research will be held this Saturday from 11 a.m. to 7 p.m. at the Woodpecker Bar & Grill.
ATS is a rare genetic disease that affects less than 30 people in the world, including a young man from Rhinelander.
The event will include horse-drawn wagon rides, two bounce houses, a dunk tank, minnow races and raffles. Trig's brats, plated food and grilled corn on the cob will be served.
Raffle items include a Weber grill with a box of spices from Tastefully Simple Seasonings and Spices, a Milwaukee Brewers jacket, a gift certificate for Holiday Acres for either a fireplace room or the whirlpool room and a $50 gift certificate in the Three Coins dining room there, a one-hour massage, a coffee gift basket, a photography family photo session, five hours of service for in-home care (which includes nursing care or cleaning), certificates for restaurants, a handmade quilt, "a really nice piece of jewelry that was donated anonymously," and other prizes.
"It's a family-fun friendly event because we want the kids to come and do minnow races and bounce houses and wagon rides and food basically, but we want it to be a family event," said Julie Zappay-Larson, mother of Collin Schmieding, an 18-year-old with ATS.
ATS causes a lack of collagen which allows the veins and arteries to grow very twisted throughout the body and that, in turn, causes heart, joint and breathing problems, and reduced connective tissue.
"You're familiar with bubble wrap and how if you twist it it'll pop? Think of that but it's like the arterial walls around my heart and other important organs it's already twisted enough if hit too hard or twisted more it'll pop (and) cause an aneurysm," Schmieding said.
The life span for someone who has ATS is age five, so for Schmeiding to reach 18 (and graduate from high school as he did recently) is a gift.
ATS affects people of both genders and often isn't discovered until a child is hospitalized with the flu or pneumonia, according to Zappay-Larson.
Schmieding's world expanded in February when Zappay-Larson found a Facebook group for people with ATS.
Andrea Taylor, a woman in Oklahoma, created the Facebook page, contacted the Arkansaw Children's Hospital and created a non-profit group called A Twist of Fate - ATS Corp.
Many of the parents ask Zappay-Larson questions because Schmieding has had the longest history of treatment.
Through Facebook they have been in contact with nine of the 30 people affected with ATS.
"It's strange living with it for 18 years and Facebook reconnects us all," Schmieding said.
The group is trying to gather at least seven of the nine children at the Arkansas Children's Hospital this fall for genetic testing and this benefit should help them get there.
"The Arkansas Children's Hospital is where we are planning to go because the doctors have all agreed and are coordinating with the geneticist and cardiologist to do this study together as a group," Zappay-Larson said.
This will be the first group case study for ATS.
"So each family in their locations are putting on a benefit and we're pooling the money so that we can get all the kids there at the same time for the genetic testing," Zappay-Larson said.
The money raised at each location will be put toward hotel and airfare to get the children to the hospital for this study.
"It's really very important to me and everyone with ATS in general," Schmieding said.
Although they have been in nearly daily contact with the others with ATS, they haven't met face-to-face yet.
Schmieding has been in contact with some of the other children as well as an adult with ATS.
"There is one gentleman, Frank, who lives in Florida, and he has genetic testing going on right now," Zappay-Larson said. "If he truly tests positive for this then he will be the oldest living and he is 54. We are waiting for his tests to come back and if he does test positive then that is great news for the rest of us."
There is a 32-year-old woman in Canada who may have the disease but she doesn't wish to participate in testing.
"It makes me excited that there are actually people out there [with ATS]," Schmieding said.
There is a boy from the U.K. and he is 14 years old. His symptoms are almost identical to Schmieding's. He experiences exhaustion all the time and has a difficulties completing a full day of school without having rest periods.
"Their heart just can't keep up with their bodies, it's complete exhaustion all the time," Zappay-Larson said.
One of the younger boys with ATS, Aiden, drew a picture of a superhero and wrote "Collin you are my hero" on it and mailed it to him.
"There's a little kid, Aiden, he almost thinks of me as a superhero it's kind of cute," Schmieding said.
Having families who are going through the same thing, being able to share their experiences has been a wonderful thing for everyone involved.
"We're just happy to have found other people that we can connect with finally after over 18 years of not knowing anybody," Zappay-Larson said.
For more information on the benefit, contact Julie Zappay-Larson at (715) 369-3095.
Kayla Breese may be reached at firstname.lastname@example.org.
Posted: Friday, June 27, 2014
Article comment by:
I just want to clarify that the Weber Grill, The gift box of spices and the Milwaukee Brewer jacket were all donated by PS Seasoning's & Spices out of Iron Ridge, WI. They are not from Tastefully Simple. The gentleman from PS Seasoning's & Spices actually drove from Iron Ridge, WI to deliver it to me himself here in Rhinelander.
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