Loading
Search
NEWS STORIES

Local teen with rare disease raises money for medical studySubmitted: 06/29/2014
Story By Karolina Buczek

Local teen with rare disease raises money for medical study
RHINELANDER - Medical research can help patients and their families understand a disease. But some diseases are so rare that there's not much help out there. A Rhinelander teen with a very rare disease wants to change that.

Arterial Tortuosity Syndrome affects less than 30 people in the world. Collin Schmieding from Rhinelander is one of them.

"Collin is one of the oldest documented living people with the disease and he's 18 now," said Collin's mother, Julie Larson.

ATS is difficult to diagnose. But the symptoms are similar in some people who have the disease.

"It's a disorder of lack of collagen which allows the veins and arteries to grow very tortuous and twisted throughout the body," said Larson.

People with ATS have a high risk of having an aneurism.

"They don't play sports, they don't go jogging, they don't do anything very physical for the fear of having an aneurism," said Larson.

Collin and his family didn't know anyone else who had the disease. A few months ago, they found a Facebook page for ATS. They were able to give advice to other families.

"I was able to share information. It wasn't all positive but it at least gave them some answers to their unknown questions because their kids are a lot younger than what my son is," said Larson.

The families started a non profit so they can send their kids to the Arkansas Children's Hospital for a genetic testing study.

"It's a combination of excitement and nervousness, just wondering generally what's going to happen," said Collin Schmieding. "It's just going to be so interesting to talk and interact with other people like me."

The family held a local benefit to raise money for the trip. They believe this study can help people understand the disease.

"It's been great to see the community come together for something we really need to have done. I know there's probably a lot more people out there that are undiagnosed at this time and we're hoping that with our case study, they can get a proper diagnosis," said Larson.

Collin hopes the benefit will let people know more about ATS.

"I just want people to know about this. It's such a strange reaction when I tell people [I have] ATS. It's just a giant question mark above their head," said Schmieding.

Text Size: + Increase | Decrease -
| Print Story | Email Story
Sponsored in part by HodagSports.com





 IN OTHER NEWS

LODI - Authorities say the pilot of a small plane suffered minor injuries in a crash near the Lodi Lakeland Airport.

+ Read More

Play Video

WOODRUFF - The Howard Young Medical Center showed people a new addition that took almost two years to complete.

The rehabilitation center went through a $5 million makeover. It expanded into one big room with new equipment, new bathrooms, and a new pediatric center.

+ Read More

RHINELANDER - Paul Evensen is a busy man. During the weekdays, he's at the front desk welcoming people into Rhinelander's St. Mary's Hospital Clinic.

On week nights, he's attending choir practices with two different chorus groups: The Lakeland Barbershop Chorus and the Hymns and Hers.

When the weekends come around, he just wants to do one thing.

"Take a nap," he said.

But he's wasn't dozing off Sunday because it was time that his hard work paid off.

+ Read More

Play Video

EAGLE RIVER - You normally can find Santa at shopping centers, holiday buffets, or of course, delivering presents on Christmas Eve.

But one event brought Santa to a place he doesn't typically go.

Sunday, one mom brought Mr. Claus to the Eagle River Hockey and Sports Arena.

She invited him out on the ice to skate and take pictures with kids.

Jen Hicks says she got Santa there by writing him a letter.

+ Read More

Play Video

KING - Gary Mader is a retired veteran who has lived at the Wisconsin Veterans Home in King, WI, for the past 13 years. He has a regular Saturday routine there.

"I help people get down to the dining room for breakfast and serve it," Mader said.

Saturday, he broke that routine to honor a group he holds close to his heart.

"I'm very proud to do anything that can help veterans," he continued.

At 10 a.m., Mader went to the Central Wisconsin Veterans Memorial Cemetery, across from his home, to help lay wreaths over gravestones.

+ Read More

Play Video

WAUSAU - December brings plenty of holiday markets to shop at.

There are a lot of handmade items and Christmas treats to go around.

Saturday's Makers Market in Wausau provided just that but did things a little bit differently.

They tried to reach a younger demographic and offer them new styles and trends from throughout Wisconsin.

"A lot of the makers here are a little bit more modern, kind of catchy items that I would like to have in my own home and people my age would like to have, too," said co-founder Alex Eichten.

This is their fourth event in the Wausau area.

She said more 2,000 people came out to shop.

+ Read More

MARSHFIELD -
6:01 p.m.

Marshfield Police have found William Crowley and have taken him into custody.

10:16 a.m.

Marshfield Police are searching for a man who shot another man on S. Cherry Ave in Marshfield Saturday morning around 1 a.m.

+ Read More
+ More General News
Search: 





Click Here