Thursday, August 15, 2013


It was no less than 2 years ago, that Nate and I were openly mocking facebook, blogging, and most other forms of social media.  Yes, Nate and I eat our words quite frequently in life.  That's what we get for always having an opinion on everything. 

We finally started the social media game when Nate started his own business last year and shortly after, Evey was born and social media has turned into one of the greatest blessings in our lives.  We found a facebook group for 17q21.31 microdeletion syndrome (aka Kooelen-de Vries Syndrome) right after we received Evey's diagnosis at 2 months old.  Since then, it has been a huge blessing to have friends all over the world that can help us understand what to expect in the future and what we can do now to help improve Eves Knees life.

Long story longer, the group has started "informal" gatherings once a year, with whatever brave parent that decides to volunteer their time and home city for the yearly meeting.  This year Evey and I had the opportunity to attend a gathering in Indianapolis, Indiana with 31 other "kool" kids and their families. To say it was a life-changing experience, would be an understatement.  It was incredible to see Evey's buddies that all have similar features, some could have been her twins, and they all just molded together.  My favorite part of it all was the instant bond with the parents of these kiddos. It was so fun to meet parents that we've been talking with online for a year and to finally be able to hug and meet their kids.  They felt like they have been family all along.

Last but not least, Dr. Koolen, "the man, the myth, the legend", flew in from the Netherlands just to be at the gathering.  He let all the parents ask any questions and gave us all a genetics 101 class.  I have met a couple geneticists in this last year and never have I met a more warm, personable, truly humble, man.  He took the time with each parent and played with the kids like they were his own.  As silly as it sounds, out of all the syndromes, I'm sure glad Evey was blessed to be a "kool" kid.  These parents and families are so chosen and it's an honor to belong to this amazing group of people.  Can't wait for all the gatherings each year and to watch the group grow for years to come. 
I love our new insta-family.

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