Advocacy can take many different paths and forms. Valerie King, North Carolina advocate and trailblazer, shares her experience with You’re the Cure over the past several years and how she got involved with the grassroots network.
As the mom of a congenital heart disease survivor, I am submersed into a life I never imagined existed. I found out at 20 weeks that my daughter, Gretta, had a heart defect. “Valerie, your little girl has something wrong with her heart. We don’t know exactly what is going on so we are going to make you an appointment with a pediatric cardiologist.” Those words are burned in my brain, they haunt me because I had never heard of a heart defect. The next weeks were full of ultrasounds and doctor appointments. I learned a lot of medical jargon very quickly. I also learned the specific diagnosis that our daughter had didn’t have very good statistics to go with it.
What is a parent to do?
I did everything I could to help ensure my sweet little girl would stay as healthy as possible. I kept her home when we weren’t in the hospital. I bought hand sanitizer in bulk and made sure that anyone that had a sniffle didn’t come anywhere near her. While I stayed in the hospital with our little girl my husband worked tirelessly. He came every night to see us at the hospital and to bring me dinner, and he would go back home to work another day. At the hospital, the nurses, doctors, and support staff were always amazing but it was a lonely place.
That is when I decided that there had to be something better.
I began to work with a peer to peer group called the Tinman Club where parents got together and shared their fears, learned how to advocate for their children, and raised awareness. I created a visiting program at the hospital that allowed me to go in and see families and let them know they weren’t alone. I also joined forces with the American Heart Association and started working on the NC Pulse Ox Bill.
Joining forces with the AHA to work on the Pulse Ox bill would consume many hours of my time over the next 2 years. I realized a passion for legislative advocacy that I never knew I had. During all my time working on the Pulse Ox Bill, I got other families involved and made sure that our voices would be heard at the 2013 NC State Lobby Day. We invited the Chief of Pediatric Cardiology from Brenner Children’s Hospital to attend to help lend a voice to the cause. Being in Raleigh that day with all those families empowered me to do even more. I joined the NC AHA Advocacy committee and made every cause something I could advocate for in my daughter’s name.
Over the years, I have become very passionate about advocating and have gotten Gretta involved. She has attended AHA NC State Lobby Day numerous times, as well as the AHA Federal Lobby Day. She is a spokesperson for the Triad AHA office. She has been featured in Heart Balls, Go Red Fashion Shows, and is this year’s Winston-Salem Heart Stroke Walk Princess. Gretta will tell you how she loves the American Heart Association “because they raise money to give to doctors to help make kids like me better!”
As I look at the year ahead there are policies both locally and federally that impact our lives and so many like us. I look forward to giving my time to an organization that benefits not only my sweet little miracle but so many like her.
We value our advocates like Valerie who have become engaged with the network for a myriad of reasons. Do you know someone who might enjoy taking action on policy that can help save lives? Recruit them today to join You’re the Cure!