Will’s Way, Life with Cornelia deLange Syndrome

This weekend we said goodbye to Lisa.  Heartbreaking to see your friends hurting.  Heartbreaking to relive the early, raw grief.  Heartbreaking to know that your turn will be coming.

Frank and Julie are amazing people who have changed the world for people living with CdLS.  There’s no way to repay them for making our life easier.  I just hope that we can pay it forward.

 So good to be surrounded by CdLS families.  We go about our daily lives doing what we do because we have to.  There is something magical about spending time with those who truly know.  It gives me such strength.