2017 Congenital Heart Legislative Conference


During the two-day conference in D.C., which was put on by the Pediatric Congenital Heart Association, I was able to share Sadie's story on the Hill to advocate for NIH research funding and CDC data collection. I want so badly for all the CHD advocacy that I've thrown myself into since Sadie died to not only help others, but also to make me feel better. To make me feel like I'm honoring Sadie by sharing her story. It's hard to go to walks and conferences where most of the parents there are advocating for their child who is still fighting, who is still here. It's just as hard to see the kids that are thriving as it is to meet the parents whose children are dead too. It all makes me so upset and angry. I advocate to share Sadie's story and, in turn, help others, but I also advocate with the hope that I will get something out of it that feels good and doesn't hurt. While attending this conference was a very powerful and amazing experience, I come away feeling more upset than when I left. Most of these parents are fighting for their kid's lives; I'm fighting to make sure my kid's life isn't forgotten. It's all I can do for her and I hate that.

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