Today we “Walked For Victory” with the themarfanfoundation vedsmovement and loeysdietz 💜❤️🩵 As most of you know, I have Vascular Ehlers Danlos Syndrome — gene COLA31 and after testing our entire family, we found the same #VEDS variant in my mom and sister and then a de novo variant (spontaneous mutation) of Loeys-Dietz Syndrome — gene TGFB2 in Halstie that NO ONE else in our family has. She has a 50% chance of passing it down if she chooses to have children. I didn’t know much about my genetics when I had my kids. I only truly understood the severity at genetic counseling appointments when I was pregnant with Payson. It definitely explains the complicated birth and #complexdiagnoses my entire life. My grandfather died of vascular complications likely related to VEDS. LDS truly explains Halstie from birth until now and each little complication we’ve encountered is so predictable for Loeys-Dietz. Although dangerous, we can be prepared for what comes our way. Today was about community a...