ST. JOSEPH, Mo. — Jake Burnam, 13, was diagnosed with hypertrophic cardiomyopathy in November 2019. The condition has thickened his heart’s left ventricle, making it difficult to pump blood. It hinders him from doing what most teenage boys should be able to do, like participate in gym class and play his favorite sports.
“I just started playing hockey when I was in third grade. Since I got my heart condition, I can’t really play anymore,” Burnam said. “Just have a special place in it for my heart.”
Burnam recalls the day he was told sports would be difficult to do. Physical activity can become dangerous if it increases his heart rate and causes him to faint.
He has found new hobbies since his diagnosis like drawing, playing musical instruments and building Legos.
“Whenever I first heard about it, I started crying because I didn’t want it, I didn't want it to be me,” Burnam said.
With no history of heart disease in Burnam’s family, his parents were shocked to find out it was in their genes. Their oldest daughter showed no signs of heart complications.
“He just happened to get both of our defective genes, and that’s why he developed it,” said Holly Burnam, Jake's mother. “You feel guilty.”
His parents are grateful for their son who keeps fighting and for doctors who continue to provide a way forward.
“They told us that the information they were sharing with us that day was information they couldn’t have shared with us as recent as 10 years ago,” said Jake’s dad, Rusty Burnam.
Advancement in medical technology has given the Burnams peace of mind as well.
“I have a defibrillator that also kind of counts as a pacemaker,” Burnam said. “I treat it as another body part with extra care.”
It gives him the courage to keep going and reminds him that he is safe so he can hopefully go back to doing what he loves most — playing hockey.
“It would mean the world,” Burnam said.