Son's Diagnosis With Heart Condition Inspires Homewood Woman's Fundraising Effort

HOMEWOOD, IL — A Homewood teen's diagnosis with a rare heart condition has inspired his mother's plight to raise funds for research into the disease.

Patti DeBoer, a 26-year teacher, is rallying support for an afternoon fundraiser set for Sunday, Oct. 4 at Thornton Distilling Co. The event, which will feature live music from local musicians and professional storytellers, will raise money for the Children's Cardiomyopathy Foundation (CCF).

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It comes as the result of DeBoer's son, Jaxson, being diagnosed at 15 years old with pediatric hypertrophic cardiomyopathy (HCM)—a sometimes fatal heart condition—after an incidental finding during a routine physical.

"After we got a care plan in place for Jaxson and we were really able to process everything, what struck our family is how absolutely lucky we are that Jaxson's doctor looked at his heart when he did and that we were able to get a diagnosis before his condition progressed any further," DeBoer said.

Treatment for most HCM patients involves frequent checkups for monitoring and daily medication, but some children require heart transplants. At present, Jaxson's condition is being managed with medication, cardiac conditioning, and monitoring.

According to the CCF website, cardiomyopathy "can occur in any child regardless of age, race, gender or socioeconomic background," and "children are about 10 times more likely to develop cardiomyopathy during the first year of life than ages 2 to 18 combined." HCM can develop from viral infections, genetic predispositioning, or as a result of chemotherapy treatment, but the CCF says that more than 75 percent of cases have no known cause. The CCF also says early diagnosis is key to patient outcomes, as it can prevent complications and rapid progression to heart failure.

"Cardiomyopathy is a leading cause of sudden cardiac arrest in children, and it often goes undiagnosed until a catastrophic event occurs," said Kathy Swenson, executive director of the CCF. "CCF provides families and healthcare providers with accessible educational information, including downloadable resources and expert-led webinars, aimed at improving earlier diagnosis and saving lives."

"I think what scares me most about HCM is the unknown," DeBoer said. "There could be so many children, teenagers, and even athletes who are living with cardiomyopathy and don't even realize they have it. And as a teacher, that really hits home for me. I think about the students I've taught over the years and the students I'm going to teach in the future, and I can't help but wonder if some of them could have symptoms that are being overlooked or explained away as something else."

"We are so thankful for the DeBoer Family," Swenson said. "By supporting CCF, they are helping create a stronger community for families today while investing in a healthier future for children diagnosed tomorrow."

Tickets for the fundraiser include entertainment and one beverage, and they can be purchased online or at the door on Oct. 4. Performers include Moth Storytelling Award recipient Rich Pniewski and nationally-touring musician MG Bailey, among others. A full list of performers and other event information can be found on the social media event page.