Making Connections for Families with CCHD

It was a typical fall day in Maine. It rained, it cleared, it was windy, it was beautiful. However, for the close to 100 Mainers gathered at the Kennebec Valley YMCA, the day was not typical.

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Sure, there was cider, healthy snacks and pumpkins (pretty typical fall fare in Maine) but the invitee list was not your typical Mainers. It was a bunch of little heroes.

The American Heart Association in Maine hosted our inaugural Little Heart Hero event. This event has been held successfully in other states and we wanted to see if it would fly here. The purpose of the event is to connect families whose children have CCHD.  We were overwhelmed by its success. There was crafts, running, basketball, Ticker, hula hoops, a few speeches, laughter and general chaos. The highlight was awesome music by Maine country music musician Mark Gentle (check out his video https://youtu.be/J51p3dVi0jA) about his son with CCHD.

We were also able to highlight two legislative victories and the legislators who made them happen. Rep. Henry Beck thanked his constituents, Megan Allen and Liz Roy, for their tireless efforts to bring pulse oximetry testing to all Maine hospitals and Rep. Matt Pouliot touted the fantastic new law that requires all high schools teach Hands-Only CPR. We were so happy they could attend.

We hope to host this event each year and incorporate more parent-specific networking activities. If you’d like to help plan, please email me: [email protected].

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