AAOCA, which stands for anomalous aortic origin of a coronary artery, is a rare heart defect that is associated with an increased risk of decreased blood flow to the heart tissue (called ischemia) and sudden death in otherwise healthy children and young adults.
According to the Children’s Heart Foundation, the increased risk of sudden death appears to be greatest during or just after exercise, among otherwise healthy children and young adults, and is the second leading cause of sudden death in children and young adults participating in sports.
Seth is an 8-year old with a dream of becoming a paleontologist so he can dig for dinosaur fossils. He also has AAOCA and Ehlers Danlos, which is connective tissue disorder that, according to his mother Jamie Forrester, gives Seth “really stretchy skin and if he hurts himself it takes him a really long time to heal.” This disorder is also the cause of his loose joints, which results causes his muscles in his body to work twice as hard to do things like sit and stand or run and play.
“Our whole life changed a year ago when we finally got our diagnosis, and it was like opening up Pandora’s box, because then all of a sudden it was therapies and things to help manage it. Chronic pain is one of the things that go along with it," said Forrester. "Physical therapy trying to help get those muscles super strong to help stabilize those joints. We have to be careful with activities and things…even the positioning that they sit in can affect him.”
On January 11th, Seth will undergo open-heart surgery that will, hopefully, enable the blood flow to reach the heart without restrictions. Unfortunately, Forrester told KBest News that because of the Ehlers Danlos Syndrome, “it adds another aspect of worrying to it because of the way he scars. There’s a chance that the scar tissue could really kind of take over where they work on his heart and then turn around and block that flow. So, he’ll be monitored really carefully with several different kinds of tests and then he’ll be followed by cardiology for the rest of his life.”
On Sunday, New Year’s Eve, beginning at 3 PM a Brave Heart Benefit will take place at the Train Car, located at 100 S. Main. The event is 21 years old and over.
There will be a drawing with various prizes and items from local businesses, fun challenges and the Seth Special. The Brave Heart event will help spread awareness for AAOCA and raise funds for medical expenses for the open-heart surgery Seth will be having Thursday January 11th.