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‘Karing for Kycen’ Fundraiser to Benefit Toddler

Jul 17, 2016 08:50PM ● Published by Shannon Antinori

Friends and family are rallying around a local toddler battling an inflammatory neurological disorder.

“Karing for Kycen,” set for 2 to 11:30 p.m. Saturday, July 23, at at Fox Valley Kickers Club, 1015 Harvey Road in Oswego, is slated to raise money for the family of 21-month-old Kycen Schimandle.

Kycen was just 9 months old when he was diagnosed with Opsoclonus-Myoclonus Syndrome (OMS), a rare autoimmune neurological disorder.

“At around 4 months old, we noticed he wasn’t doing the things he was supposed to be doing,” said mom Stephanie Kaspar, a teacher at Long Beach Elementary School.

Kycen was initially diagnosed with infantile spasms, a seizure disorder, but Kaspar said she and husband Justin Schimandle knew something else was wrong.

“The treatment wasn’t working, and we noticed other symptoms,” such as abnormal eye movements, she said.

Kaspar said she took a video of Kycen’s “dancing eyes” and sent it to his neurologist, who was able to diagnose the infant with OMS.

“It’s really rare, not a lot of people have it,” Kaspar said. Luckily, Kycen’s doctors at Central DuPage Hospital were familiar with the disease, she said. “We have a really great team at Central DuPage."

Now 21 months old, Kycen continues to fight the disease, which is often accompanied by neuroblastoma, a common form of childhood cancer. Last year, doctors found a mass in Kycen’s abdomen that was diagnosed as a partially malignant ganglionneuroblastoma. The mass was removed in May, Kaspar said.

Now, in addition to traveling to Central DuPage Hospital once a week to treat his OMS, Kycen is also undergoing chemotherapy at the University of Chicago Medical Center.

Kycen’s health issues have also led to developmental delays.

“He is severely delayed, but the doctors are hopeful that with constant treatment he will get where he needs to be,” Kaspar said.

“While it's possible that he may be wheelchair bound, with treatment, it is also possible for children with his conditions to improve and catch up to normal average motor skills of other kids by the age of 7 or 8,” organizers wrote on the Karing for Kycen Facebook page. “Many of these treatments are done out of state, which requires his parents to miss work to travel.”

Kaspar said she is fortunate that her coworkers and staff at Long Beach Elementary have been supportive, even donating their days off to her to allow her to take Kycen for treatment.

The July 23 benefit is aimed at helping Kycen, his parents and siblings Kaiden and Kolten as he continues his fight. The event will have a carnival atmosphere with food, music from ’70s/’80s band Lingering Gas and entertainment for all ages including a magician, along with raffles.

The entry fee is $10 at the door for adults and free for kids age 12 and younger. Admission is free for anyone wearing a #kycenstrong shirt. Carnival games and a dinner including Italian beef, brats, hot dogs, sides and dessert are free.

The event will also include a cash bar, and dinner will be served from 4 to 7 p.m.. Guests are asked to enter via the side door on the back of the building.

Visit the Karing for Kycen Facebook page for more information, including a schedule of events.

Those who can’t attend the July 23 Karing for Kycen event can still support the fundraiser by making a donation on the Karing for Kycen GoFundMe page.

Another fundraiser, a No Limit Texas Hold ‘Em Tournament, is slated for Saturday, July 30, at St. George Citizen Club, 667 Sheridan Ave., in Aurora.

Registration for Kards for Kycen starts at 4 p.m., and the tournament begins at 5 p.m. Proceeds from $5 extra chips, as well as 50 percent of re-buys and add-ons and a small side game rake, will benefit Karing for Kycen.

For more information on the tournament, email edward.marek@sbcglobal.net.

 

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