The last few days I haven't been able to post... sadly Ive had a sick kid on my hands (Kaleb not Josh) and he's needing extra TLC. I did however have some time earlier in the week to begin this new project for the CCHA. There will be more to come so keep your eyes posted. Remember to share them when they pop up on your news-feeds and twitter accounts. The hardest part of Living with Congenital Heart Defects is that no one knows about them. These kids/adults need specialists, a regular cardiologist won't do. We need people to know, we need people to care. We need funding for research, funding for more facilities, better facilities, and the adult care system in particular needs help desperately! Check out the Canadian Congenital Heart Alliance for more information on how you can help.
My dream for Josh and those like him would be that when he turns 18, nothing changes. He stays within the same walls he's always known, his care doesn't change, his surgeon doesn't change. My dream is not unrealistic. It can happen. You can help.
DISCLAIMER: When I speak about CHD's I am for the most part referring to 'C'CHD's (COMPLEX CONGENITAL HEART DEFECTS) There are some minor heart defects that can be resolved with on procedure or surgery however, for the purposes of this blog they are not what I am speaking about. I am talking about the more than half of kids who are born with defects that will require LIFELONG expert care, I am talking about the kids who won't be cured.