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GREENFIELD - Whitnall Middle School students are striving to make awareness about dysautonomia as wide as its impact.

Dysautonomia, a term used for a variety of illnesses that affect the autonomic nervous system, isn't something the kids learn about in school. Even many doctors are unaware of its existence.

However, the illness was on the forefront of the students' minds after one of their classmates was diagnosed, and they quickly decided that they wanted to support her by raising money for dysautonomia at the school carnival.

Bigger effort

The students had revamped the tradition of a school carnival last year, raising money for a local family whose young child had brain cancer. Excited to put on the carnival again, and support the cause, they approached their principal with the idea last semester.

"Other students said (the student with dysautonomia) did so much work for the carnival last year, we should look to raise funds for dysautonomia, because she was just diagnosed," WMS Principal Lynn Leroy said.

This year's carnival, the students promise, will be even bigger and better. It has been months in the making and, unlike last year, will be open to all Whitnall families. They hope this means it will raise even more money and spread awareness – and acceptance – for dysautonomia along the way.

All the money raised from the carnival May 5 will be donated to Dysautonomia International, a non-profit organization dedicated to spreading dysautonomia awareness and funding research efforts to study the illness.

What it is

Though it is not well-known, dysautonomia is believed to be widespread, impacting millions of people worldwide. Postural Orthostatic Tachycardia Syndrome, for example, is estimated to affect one out of 100 teenagers.

"(POTS) can be associated with profound lightheadedness and brain fog – a consequence of not getting enough blood flow to their brain – which can make it hard to concentrate at school or work," said Lauren Stiles, Dysautonomia International president. "(POTS patients') bodies require a lot more energy just to do the things the rest of us take for granted every day."

It can often take years for a patient to get diagnosed, since the disease isn't widely known. The fact many types of dysautonomia are invisible further complicates the issue.

"Probably one of the most challenging things for people who have dysautonomia is that they look completely normal on the outside," Stiles said. "When you're young and you look fine, teachers, family, and doctors might not understand how sick you really are."

The students have also recognized dysautonomia's limited notoriety as a challenge, and said they have heard other students make skeptical comments about whether the illness is real.

"It’s hard to raise funds for something that people don’t even believe in," said student Elizabeth Jesse-Johnson. "Even our own peers need to learn to be more accepting. Just because you don’t see it doesn’t mean it's not there."

Raising awareness

In addition to raising money for Dysautonomia International's research fund, the students hope that the carnival will make their classmates, and the community, realize the illness is indeed real and worth supporting.

During the carnival, the students said there will be a table set up where people can learn more about the illness, along with various game booths. The carnival will also be covered in the color turquoise, the official color for dysautonomia awareness.

"This kind of sustained dedication and compassion is not common at all (in kids this age)," said WMS Principal Leroy. "The ability that they have to stick with it and persevere through the speed bumps to make it an impressive event, that's the most impressive part."

The students have also started fundraising and awareness efforts at school. A dysautonomia awareness assembly is scheduled for April 27, when a few people who have been diagnosed will speak about their illness.

Measuring effort

Students will also be rewarded for reaching certain monetary thresholds.

Right now, a thermometer is posted on the wall displaying the school's current fundraising amount. Depending how much money students raise, a different teacher will have the honor of being ceremonially taped to the wall. If the students raise $800, the top goal, Dean of Students Brian Borden will get that honor.

Their fundraising total currently sits at $300 from a fundraiser at Buffalo Wild Wings, and the students hope to add even more to the total through carnival admission and raffle items they've secured from local businesses.

Students are hopeful their many months of planning will be worth it.

"It's probably all of our main priority right now," said student Hailey Constantineau. "We want to leave a mark on our school. A positive one."

If you go

When: 6:30 - 9:30 p.m. Friday, May 5

Where: Whitnall Middle School, 5025 S. 116th St.

What: Games, raffles, movie showing, food, and more

Why: Fundraiser for Dysautonomia International's research fund

Cost: $5 admission for adults and children older than age 3

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