Chatfield-area parents hope to raise
awareness of epilepsy during local event
Monday, July 15, 2013 6:14 AM
"Not another moment lost to seizures" is the motto of the nationwide Epilepsy Foundation. Leading the fight against seizures while funding cure research and educating people about epilepsy, the Epilepsy Foundation's affiliate in Minnesota has helped people from all corners of the state, including southeast Minnesota. Two families from Chatfield, who have been affected by epilepsy, will be holding a fundraiser on Saturday, July 20, to raise money toward Stroll for Epilepsy, the epilepsy event similar to Relay for Life. This year's Stroll for Epilepsy is Thursday, Aug. 8, at the Rochester Community and Technical College Sports Center.
Shown with her team Z-Power in 2012, Zayda Priebe is ready to head back for the Aug. 8 Stroll for Epilepsy to donate money raised from the July 20 supper fundraiser at JAC’s Bar & Grill. SUBMITTED PHOTO
Epilepsy affects people of all ages and backgrounds. Outreach coordinator for the Southern Minnesota Region Vicki Snyder dedicates her livelihood to the Epilepsy Foundation of Minnesota. She gives presentations throughout the region on seizure recognition and response, which are tailored to reach anybody from preschool-age children to senior citizens.
Her focus, she shared, is to help people understand epilepsy and accept the person who has it. Every year, the foundation designates a community to be "Seizure Smart." The community becomes a center for information and Snyder focuses outreach and awareness education even more so in that community.
The Stroll for Epilepsy is meant to be a community event that allows families dealing with epilepsy to form supportive connections with others.
Snyder said many people who have epilepsy, or who have loved ones with the condition, do not know where they can turn for help.
The Epilepsy Foundation is where the Henry and Priebe families of the Chatfield area have found the support they were looking for.
Zayda's and Wyatt's stories
Wyatt Henry, whose parents are Lynnae and Brian, was 2 and a half years old when he first experienced a seizure. At the time, he was with family enjoying the Como Zoo. A month later, he had another one.
Wyatt continued having seizures more and more frequently. His parents wanted to know why the seizures were happening, but the doctors could not figure it out. According to data from the Epilepsy Foundation, 70 percent of epilepsy cases have unknown causes.
The seizures Wyatt was having are called Generalized Tonic Clonic, or Grand Mals. These episodes usually cause the person to fall and experience muscle jerks, shallow breathing and other symptoms.
Lynnae said Wyatt has been through skin biopsies, medications, scans and even special diets. Today, Wyatt is 5 and, with the exception of one episode, has not had a seizure in a year. It is possible that as he grows, Wyatt may stop having seizures, but there are many unknowns along the way.
Zayda Priebe is 9 years old and loves being creative. She has been dealing with absence seizures since 2009. In response to whooping cough, Zayda's immune system attacked her brain instead of the cough and left behind scar tissue. Now, her seizures cause her to stare blankly and be inattentive of her surroundings. The seizure usually passes quickly, but can easily be misunderstood as daydreaming.
Zayda's and Wyatt's families did not know each other's experiences until Zayda's younger sister came home from school one day and said there was a boy who had epilepsy.
"She talked about Wyatt for a week," recalled Amanda Priebe, Zayda's mother. She and Lynnae eventually met at the beginning of the past school year and started forming ideas about how to raise awareness about epilepsy in Chatfield and Fillmore County at large.
Both had participated in the Rochester Stroll for Epilepsy and started thinking about fundraising opportunities last March. "Lynnae had a lot of ideas and was very enthusiastic about the event," shared Amanda.
Jeff and Candi Hare of JAC's Bar & Grill in Chatfield were willing to host a benefit supper for the Stroll and donate a part of the meal. At $8 per meal, a person can get two tacos, refried beans, Spanish rice, a brownie, and a can of pop. The evening will also include music, a balloon artist, face painting, cake auction and a beanbag toss. For $5, a person will get five tosses for the beanbag toss. Each toss that makes it in the hole puts the thrower into a drawing for their own customized beanbag board. A cash raffle drawing will also take place. Five dollar tickets are being sold at JAC's and Chosen Valley Threads and can be purchased from Lynnae and Amanda as well. The top prize will be $250.
The money raised from the event, running from 5 to 7 p.m., will be donated to the Epilepsy Foundation at the Stroll on Aug. 8.
Lynnae is looking forward to the awareness this local event will bring to a widespread issue. "For anyone who has epilepsy who doesn't have support, we've been through it. We understand," she stated, encouraging people to join the cause.
People can join or form teams to fundraise for the Stroll in Rochester. Zayda's team, Z-Power, has been participating in the stroll for four years and Wyatt's team, Wy's Guys, has been at the Rochester event for the past two.
Amanda said their family and friends decided to put together a team after they learned more about epilepsy through awareness outreach in Chatfield Elementary School. She didn't know anyone else who had epilepsy, so the Stroll helped her build a support network.
During the Stroll, kids can have fun with many free events and parents can be more at ease, since doctors and nurses attend the event as well. This year, there will even be a dunk tank for kids to dunk their doctors!
"People can talk about epilepsy and feel comfortable with talking about it," shared Lynnae.
Now in its 15th year, the Stroll for Epilepsy raised over $200,000 last year. This amount was achieved through five simultaneous events across Minnesota and Fargo, N.D. That money goes toward research for better treatments and possible cures. It also goes toward funding Camp Oz, a camp in Hudson, Wis., for youth who experience seizures. Zayda has attended the camp and loved it. She was able to ride horseback, go rock climbing, swim and have fun in an environment staffed by medical personnel who can properly respond to seizures. This year, 108 youth will attend the camp. Normally, the camp costs $1,400 per camper, but is reduced to $200 through the Epilepsy Foundation of Minnesota.
Being able to identify with others going through similar experiences helps the campers grow even though each experiences epilepsy differently. There are over 20 different types of seizures and each can manifest itself through a variety of symptoms.
Education on responding to these episodes is a must and that is the overall goal of Lynnae and Amanda: to inspire more people to learn about epilepsy.
"It would be nice to have a community 'seizure smart' in this area," Amanda stated. She added educating kids early in grade school would be very effective and that she appreciates how Chatfield has responded to there being two kids with epilepsy in the school.
Both Zayda and Wyatt have been improving. Zayda was able to go off her medication. Their parents are more comfortable with talking to people about epilepsy and are hoping many will step up, form teams and join them in the Stroll for Epilepsy.
More information about epilepsy and the Stroll can be found at www.epilepsyfoundationmn.org. Information about the July 20 fundraiser in Chatfield can be found by calling Lynnae at (507) 273-6112 or Amanda at (507) 951-4869.