It’s been so many years and I still—it’s not hard to talk about, but it is hard to talk about. I don’t know—how come I can go to work and do my job, but I hear someone on a ventilator and I see Isabelle’s face? It clearly was stressful, but it didn’t seem overwhelming to me when we were there, I just felt like, “Alright, we can get through this, we can totally get through this” and my sole focus was Isabelle only and not all the medical things around her, but just like “Isabelle, look at me, we can do this.” We have always been a team. Clearly things affect you and you don’t even know it…until you know it.

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

 

Very, very unfortunately, there was a little girl at Chloe’s school last year that had a cardiac arrest—same age as Chloe—and she passed away. That was a big thing for Chloe. It was difficult for everybody. It was difficult for Chloe because it made her face the fact of how lucky she was. Rather than just numbers, they say it’s a three percent survival rate, a five percent survival rate—it’s just numbers. But for it to actually happen to a friend of hers, and her friend not survive, it made her realize how lucky she was. We call it lucky, but it wasn’t lucky, it was that all the pieces were in place. She was in the right place at the right time. Her school knew what to do, and they had staff qualified to perform CPR. When she was taken to the hospital, they knew what to do. So we say, “You’re lucky,” but it’s not lucky. Luck has nothing to do with it.

 – Jim, father of Chloe, age 13, CPVT

 

It’s a blur even to try and remember what it was like. I actually did lose some memory- I lost a couple months, I just don’t have any memory of times. I lost it when I was first diagnosed, which I thought was the electricity because I had been zapped, so I thought maybe that was it, but then with Rebecca I realized it’s just trauma, because I lost a bunch of months that I can’t remember. I tell the same story over and over again, it’s like having a baby where you just don’t have anything left except your one focus. So people just have to be easy on themselves.

 – Amy, mother of Rebecca, age 19, ARVD