Our otherwise healthy (to date!) four-year-old went into Cardiac Arrest on our kitchen floor- the beginning of this month long's quest for information, diagnostics, care, surgery, and education for us to be best prepared to keep our daughter safe should, in the ways we explained to her, her heart need a little extra help again. There have been a hundred tiny miracles...those "right places at the right times" that have allowed us to have our daughter with us healthy, happy, and strong. As we understood, through genetics, our daughter's rare mutation, and the corresponding higher incidence of repeat cardiac events and reduced efficacy of traditional intervention, we cried, we worried, we mourned. Then, we got to work- getting behind the best plan, the only plan, to place an ICD to provide the therapy necessary for future events. Three weeks ago we likely would have "known" what ACD and ICD were but had no idea that its electricity would save, and likely will save again, our little girl's life.

The care team at Riley has had our daughter on their hearts and minds. We have felt it. Seen it. Been invited into that magical process where science, art, research, genetics, and quality of life all culminate in one tiny little girl. While we were immediately on board to place the necessary device to best ensure our daughter's safety moving forward, we had a gazillion "just exactly how does this look in real life" questions post-operation. And that's when Donna walked into our world. As the Pacemaker/ICD nurse coordinator, Donna offered the knowledge of the ins and outs...the what to expect...the "I've got you's" we needed and will need. Meeting us in our daughter's hospital room, she offered the comfort of "I will be "accessibly in" our daughter's picture for some time. We will figure this thing out together". Thank you, Donna, for being in our daughter's clinical picture...and our "corner" as we have the blessing, miracle, and privilege of bringing our daughter home safely for a happy and full life.