My Very First Congenital Heart Walk

This month I had the pleasure of participating in my first Congenital Heart Walk benefiting the Adult Congenital Heart Association and The Children’s Heart Foundation. To say that I was motivated and excited would be an understatement, because my goal is always to raise awareness.

I first set out with a high goal of $2,000 for funding and research. Once all of the money from the day of the walk and my online donations are added together I will have raised a little over $1,700. This is so unbelievable to me that it is jaw-dropping—when I do other fundraisers, like birthday wishes on Facebook, I’ve never raised that much!

So as donations began rolling in, I promoted it all over social media. My enthusiasm grew each day. I changed my team name from Team Ellie to Team Ellie Heart Beats, a play on words since I sing, which I thought was clever.

For the first time I invested time and money looking to buy shirts. Man, oh man, are they expensive. Once I knew how many people would be on my team it helped to narrow the cost. I kept the shirts simple with just #CHDAWARENESS, which has been my hashtag every time I posted the link about the walk (and included a brief synopsis of my story).

I also ordered Wonder Woman pins because she was my childhood superhero icon and I adopted her as my alter ego almost 10 years ago. Unfortunately, the pins have not arrived yet. But that’s OK; I’ll have them for next year.

Finally Sunday arrived and we drove the 40 minutes into Manhattan, to Riverbank Park. This was a place that we have all passed but never been to. The location was perfect! I was in shock and was amazed to see how large of an event it was and to see all the many future generations of adult CHD patients there. It was great to see how fantastically these children and babies were doing.

I made a few new friends, and spoke with some parents, who were pleased to see that I am an adult with so many defects and surgeries who looks healthy and, for the most part, is doing well. They beamed with hope, which in my eyes is doing my job of advocating and bringing #CHDAWARENESS to future generations.

You never know who these moms and dads might tell that they met an adult with CHD. Word of mouth is powerful. Advocating for CHD is something I will never give up on, and my family has already decided that we will attend the walk next year. I hope to be a volunteer next year to be further involved, too. I also hope that this blog inspires others to get involved and will help to grow my team. It was a perfect first walk, and my hard efforts paid off. As adults with CHD, we should be proud that advocacy is out there and strong!