HCM is one of those ‘underlying conditions’ that most people actually don’t know they have. Actually, one in 500 people all around the world have it. I have always felt very lucky to know about my HCM diagnosis. For me, I felt completely ‘normal’ like I had before the doctors identified my HCM. I can do most everything anyone else can, but I guess some things are done with a little extra caution. With Cody around though, I feel a degree safer. Well, at least I don’t feel alone.” ~ Brody (Cody the Cockatrice series book 3)
Cody’s job is to protect children, like a fairy-god-parent, but he calls himself a CGP, as in Cockatrice-god-Parent. His guardian children are those in need of a little extra. Brody and his younger brother Bryant have a heart disease called Hypertrophic Cardiomyopathy (HCM) that doesn’t discriminate against age, gender, or race. Brody explains HCM in Once Upon the Rhine, “We don’t look or seem any different than anyone else our ages. As the doctors say, we hide in plain sight. To everyone, we look like every other kid, but with HCM, we must know our limitations.” Their oldest brother Bowen is as healthy as can be, besides the fact that he has some serious allergies, but now they have Cody to help them. What they don’t know is Cody’s secret magic power is believing. The boys are so very happy when Cody’s around. Just imagine, if you believe in yourself, anything is possible. Cody once told Brody, “Be strong, brave, and fearless, but know you don’t have to do it alone!”
Brody’s HCM Symptoms were masked by so many other things, and being so young, no one expected heart disease. Here are some of the things Brody experienced and what everyone thought it was until he was first diagnosed:
- Shortness of breath – doctors said he might have asthma; coaches said he was out of shape.
- Awareness of the heart beating in chest – grownups thought he was nervous or excited about something or having a panic attack.
- Sweating – it seemed like he was always hot, and it is hot and humid in Georgia.
- Light-Headedness – maybe he hadn’t eaten enough or slept enough.
Listening to your body and having a physical once a year with an echocardiogram—no matter your age—is key to most diagnoses. In this case, both Bryant and Brody’s diagnosis was guided by having echocardiograms. However, better screening at all well-child exams, including a detailed family cardiac medical history questionnaire and especially information on any family members who have died of sudden cardiac arrest or unknown reasons at any age, would help doctors with an earlier diagnosis. This early screening could save a life—maybe your own!
As a worried mom, I looked up www.4HCM.org after their local cardiologist listed it as being one of a few of Brody’s possible diagnoses. This is how I met Lisa with HCMA, and she helps thousands and thousands of people every year. Children have been dying of sudden cardiac arrest—this isn’t new, though I felt very alone as a parent with children with HCM until I found HCMA, and they were a huge piece of the puzzle that helped save Brody and Bryant’s lives!
To learn more about HCM visit www.4HCM.org
Purchase Once Upon the Rhine (Cody The Cockatrice Series Book One) from their website and 100% of the profit will be going to a great cause !
HCMA is a nonprofit 501©3 organization