I did so much research on the condition and you know for the past 16 or 17 years, I’ve spoken with a cardiologist and spoken to her genetics class as the mother of a patient. The cardiologist teaches the genetics side and I come in and talk about the patient side, so I’ve really immersed myself in learning about the condition and now work with it myself.

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker

 

I’m very thankful every single day that we have the best cardiologist, Dr. Geggel, and he takes time to ask her how she is and every time we’ve been in the hospital they don’t just talk to us, they talk to Isabelle too. And that’s made a huge difference in her not being afraid and wanting to come, skipping right through Children’s door, and I am truly thankful for everybody. So anytime I have an opportunity to say thank you, I always do.

I tried to get the kids involved in wanting to give back to the hospital. To do that we built this lemonade stand—my husband built it and the kids helped to paint it and every spring we set it up at different things to raise money for the hospital, and that has kind of become a big thing for us too. If you ask the kids—they’ll earn money and they’ll be like, “Mom, this is for the hospital.” So it’s not just me that’s thankful too. I think that my kids get it and they always want to try to help too. If you ask Isabelle, “why does she want to help Children’s when she puts money in our jar,” she’ll say, “It’s so everybody gets to go home, mom.” So I know that every child there is just like Isabelle, they just want to go home. I think we’re really lucky.

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

 

We did talk at her school, we had AEDs put in all the schools in the town we live in, and one of the AEDs we had put into the hockey rink actually saved a life not long afterwards. I made a point of her knowing, “Because we did that, Chloe, that—it was a grandfather—man’s life was saved. We don’t know, he might have been saved anyway, but because we had that AED placed there, it was there for them to use immediately and his life was saved. So that’s why we do what we do.” And she was like, “Yeah.”

 – Jim, father of Chloe, age 13, CPVT

 

For me, I can’t imagine not doing the advocacy. I do policy advocacy for work, it’s who I am, but I didn’t do that before Jake was born. And it’s sort of interesting. I think I learned everything I needed to know about being an advocate from being Jake’s mom, but I think that all of the things I do at work are also very helpful, because I can now see things from a policy  perspective. I couldn’t imagine not giving back and contributing in some way.

I feel like Jake’s life is a miraculous gift and it’s my job to try to help and make the path easier for other people. I feel very much that that’s an obligation that I have. And it feels like a gift to be able to be that and make something positive and good come of it. If someone can learn from what I screwed up, that’s just awesome. And if I could help with policies that are going to make things easier for families, or raising money for Sisters by Heart, if I can do that and help them offer support to all of these families, how could I not do that?

 – Diane, mother of Jake, age 21, HLHS