Wow, it's been a good day! Very informative, and in a little bit we get to go to a "Motown Magic" family dinner with music and dancing. With all this new info I think we are more ready for a nap!
We actually got our first 1:1 today with Dr. Shprintzen, this was very exciting as he is the founder of the Velo-Cardio-Facial Syndrome Education Foundation, and the first to really describe the syndrome! I'll tell you more about this later, for now we have to run!
We actually got our first 1:1 today with Dr. Shprintzen, this was very exciting as he is the founder of the Velo-Cardio-Facial Syndrome Education Foundation, and the first to really describe the syndrome! I'll tell you more about this later, for now we have to run!
1 comment:
Hello, I found your site through your comment on Elijah's blog and wanted to say hi. My daughter has DiGeorge Syndrome and had her first open heart surgery last year. I love meeting other VCFS, DiGeorge families since we all go through so much of the same stuff. I am SO happy you were able to make it to the convention. I really wanted to go but we didn't have the money to send me. Maybe next year. I haven't had the chance to read up on your daughters story but I will.
Take Care,
Vanessa
P.S. Our blog is set to private so if you want to view it all you have to do is email nessa1880@yahoo.com and tell me who you are and I'll send you an invite.
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