About Us

We were married for 18 1/2 years when Greg had an aortic dissection and passed away at the age of 40. In 2017, after a 13 day stay in the ICU, we got the devastating news that Greg has Vascular Ehlers-Danlos Syndrome (vEDS). Vascular Ehlers-Danlos Syndrome is a rare, genetic, life-threatening disorder of collagen production. It mostly affects the blood vessels and hollow organs, though it also affects joints and all other connective tissue. The life-threatening part is when the blood vessels rupture or dissect. This is what happened to Greg.

We started this blog together as we processed what this diagnosis means to our family, and that Greg would likely live a shortened life. To add to everything, vEDS is a dominantly inherited condition. Three of our six children also have it.

This blog is about what we are learning, and what we have learned, as we have navigated the emotions and events of the past years.