Valve Disease Awareness Day is February 22 and Mended Hearts is a proud partner of this annual event! This year we are sharing a series of four unique stories about valve disease to highlight the fact that valve disease affects millions of people, in a variety of ways. 
Ronda Adamo is the Lead Coordinator of Mended Little Hearts of Indianapolis and is a member of the Mended Hearts/Mended Little Hearts Advocacy committee. Ronda is a passionate advocate and grandmother to Brandon.
In this part of the series we hear from Ronda about raising a child with valve disease.
My grandson, Brandon, was born October 20, 2014 at 10:49 am. After about an hour of life, Brandon began having problems and was life-lined to a nearby hospital where they put him on life support and then flew him to Riley Hospital for Children. It wasn’t until 2 AM when we found out what was going on—Brandon had a very complex heart disease that involved his tricuspid valve, mitral valve, and pulmonary valve, among other parts of his heart and lungs. Brandon has had one open-heart surgery so far and will have another in his future.
Brandon and his family have lived with me almost his entire life, so I have a unique experience as a grandmother. He is a very sweet child who is friendly with everyone he meets. His therapist often tells us that he is one of their favorites. He likes his siblings, cars, listening to music, and of course, singing loudly and dancing to it too.
I take Brandon to most of his cardiology appointments, and his cardiologist says they are surprised at how well he is doing. Brandon is possessive of “his” heart doctor and doesn’t want to share him with his siblings. Two of his siblings also have heart problems, but Brandon will tell his sister, “Today is MY heart day, NOT YOURS.” Most children fight over toys, but mine fight over their heart doctors.
Watching Brandon grow and deal with his CHD has been scary. I lost my son in 1987 due to what we now know was a CHD. Also, as the lead coordinator of Mended Little Hearts of Indianapolis, I have seen many children lose their battle and it scares me to no end. Some days I watch him run and play and some days I watch him rest on the couch while the others run around. I hate when the thought comes in my mind, “How long do I get to keep him?” I am so very grateful for every single moment.
To Learn more about Heart Valve Disease and how to raise awareness go to www.valvediseaseday.org
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