My families journey with Congenital Heart Defects began in January 2008 with the birth of our first son Joshua. Until then I had no idea that a child could be born with a heart defect or what that would look like for his life, and how much it would change our lives. Josh was born with a rare defect called pulmonary atresia (and a few other not so big defects). He has undergone four catheterizations, 4 open heart surgeries and he’s had one stroke following his 2nd cath. procedure at 3 months of age. The stroke has left him with a language impairment and weakness on the right side of his body resulting in years of therapy and possibly learning disabilities going forward.
As we began to learn the scope of CHD, what it means for us but more than that, what it means for our son I began to see that the biggest thing, perhaps the only thing I can do for him is to help raise awareness about CHD, to get people talking about it, to have it become a known entity rather than the unfamiliar. My goal is to raise as much awareness as possible, to help to ensure that the adult care system in ready for my son, and to see research advance to a place where maybe we can one day say ‘there is a cure for CHD’.
I am the mother of two boys, wife to my best friend and a photographer and blogger as well as a CHD and pediatric stroke advocate. With awareness comes knowledge and with knowledge comes hope.
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