When Jaxson DeBoer complained about being tired or winded when he became a teenager, his mother thought it was just him being overly dramatic.
He can be that way, Patti DeBoer explained, because he’s on the autism spectrum. “To know my son, he’s dramatic about everything” – including walking up a flight of stairs – and he hated sports. “He never had shortness of breath, and he never had pain. He just got very fatigued with activity when his heart rate went up.”
When he was 15 and mowing the lawn last year, Jaxson complained about his legs hurting and it being too hot. A high school physical revealed that it was much more than dramatics: He had a heart murmur.
“We’re not sure if it was always there or if this was something that was just missed,” Patti said. “It could have been there but not pronounced until he got older.”
As they looked further into it, Jaxson, now 16 and a sophomore at Homewood-Flossmoor High School, was diagnosed with pediatric hypertrophic cardiomyopathy, or HCM, which can sometimes be fatal.
“As a parent, you would never think in a million years your child has a heart issue – there wasn’t anything in our family like this,” Patti shared, adding that they had some genetic testing done to see if that had caused his condition. It did not. Doctors have recommended he have more complete genetic testing done when he turns 18.
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For now, Jaxson is on a beta blocker and has started to do cardio rehabilitation. He had considered joining the H-F water polo team because he was a swimmer, but that won’t be possible with his condition. At school, Jaxson gets extra time to walk between one building and another, and he’s in adaptive PE.
As a family, they are changing how they eat and seeing a nutritionist to avoid having too many temptations for Jaxson and because the medication he’s on for his autism has caused him to gain weight. “He’s learning to portion, when to say ‘No.’ He knows he can’t have a lot of pop or caffeine. It’s a lifestyle change that we have to get used to,” said Patti, who’s been a teacher for 26 years.
The diagnosis has come with other challenges as well. Because their insurance company has deemed Jaxson’s rehab to be “precautionary” instead of followup to a procedure or surgery, only half of the medical costs are covered. So the family pays $300 out of pocket for every treatment, which happens twice a week.
The DeBoers have joined Homewood-Flossmoor Racquet Club, where Jaxson walks on a treadmill while wearing a smart watch to monitor his resting heart rate and his cardio heart rate. “The doctors said it’s fine if we just did this light activity,” Patti said.
The latest diagnosis reminds Patti of when Jaxson was diagnosed with high-functioning autism. “I was a hands-on (parent), did all the walks. Knowledge is power. When I learned he had dyslexia, I got trained as a dyslexia specialist. District 153 got on board – I work there. I’m a big child advocate.”
She’s now advocating for her family and others who have a child diagnosed with HCM, including through a benefit for the Children’s Cardiomyopathy Foundation at 3 p.m. Oct. 4 at Thornton Distilling Co., 400 E. Margaret St. in Thornton.
“It’s to create awareness, and when I found this organization, they were wonderful,” she said. Patti, who also is a musician and did a benefit for another charity, got the idea to do something with music and has lined up professional storytellers and musicians such as Moth Storyslam winner Rich Pniewski, MG Bailey, Los Darlins (Patti’s band) and others.
The event takes place in Distiller’s Hall, which overlooks the distillery, said Julie Motherway, Thornton Distilling’s general manager of restaurant and events. It’s open to adults and those younger than 21 who come with an adult.
Tickets include entertainment and one beverage and can be bought at the door or online at give.childrenscardiomyopathy.org/livemusic. Classic craft cocktails and the distillery’s mainline spirits with a choice of mixer are ticketed options, and seasonal cocktails, craft slushies and food will be sold.
“We’re always happy to help members of our community raise money for worthy causes by offering guests memorable and enjoyable experiences,” Motherway said. “We hope that the fundraiser generates a great deal of donations for the Children’s Cardiomyopathy Foundation. We also, of course, want guests of the fundraiser to have a great time.”
According to the foundation’s 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.” More than 75% of cases have no known cause but early diagnosis is the key to the best outcome.
The DeBoers chose to support the foundation after a recommendation from their doctor at Ann & Robert H. Lurie Children’s Hospital of Chicago. Jaxson began seeing a pediatric cardiologist but now sees a cardiac myopathy pediatric specialist. “They’re a wealth of knowledge and a great support system.They have so many different articles and different findings for you to learn about,” Patti said. “They’ve been teaching us.”
She added that September is Pediatric Cardiomyopathy Awareness Month, so it seemed fitting that Jaxson had one of his routine appointments, tests and review by a cardiologist earlier this month.
Jaxson, who will attend the benefit, said it’s “very important because, like my mom has said, ‘Knowledge is power.’ This will help other people be aware of this heart condition. I was very lucky my doctor heard the murmur and took action. I hope this fundraiser brings awareness but also support to the pediatric cardiomyopathy community.”
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When he’s not boosting awareness about his condition, the teen likes to craft and play video games. He’s involved in broadcasting at Homewood-Flossmoor, and he enjoys creating props and costumes.
“I’m in the process of making an Iron Man suit right now. It’s almost done!” he said. “In the past I have made a Venom costume, a Ben 10 costume, a Kind DDD costume and a lot of other characters.”
Jaxson had a little advice for other kids who face this diagnosis: “Listen to your body, even when people say you’re fine. You know that your body is not fine. Don’t push yourself to the point where you are hurt – your body knows best.”
Patti said people have been very supportive. “I’ve been overwhelmed by the incredible outreach and support from my community and friends. From the generous donations and messages to the people simply checking in on us, it has meant so much,” she said, specifically naming her band mates in Los Darlins — Santyna Piñeiros and Doug Rafferty, along with her friends Angela Denk and Mary Madden-Pniewski, one of the storytellers.
“It has truly been amazing, and I’m so grateful for everyone who has shown up for us in so many different ways.”
Unexpected support came from a parent who’s a supervisor that she’s worked with for years at Willow Elementary School in Homewood, who shared that both of her boys had the condition, and one of them died from it years ago when he was 10. Patti knew about the boy’s death but hadn’t known its cause.
“For her to tell me, that makes me feel like I’m not alone,” she shared. “Even if I reach one parent to know they’re not alone in this, I’ve done what I wanted. … I don’t know what to say to a parent because it’s so new to us because we’re still looking for information. But knowledge is power – that’s the biggest thing I’ve learned from this.”
Melinda Moore is a freelance reporter for the Daily Southtown.