Mixed emotions

October 11, 2010 by nohandsbutours Kristi, port wine stain, Sturge Weber Syndrome 0 Comments

A week from today my beautiful girl will have her first appointment with the laser surgeon.  The procedure itself will last less than fifteen minutes from the time anesthesia starts until I’m called back to recovery.  Much less complicated and involved than the two eye surgeries she’s had so far. And yet I find myself …Read More

US 35 North ~ revisited

June 11, 2010 by nohandsbutours Kristi, port wine stain, Sturge Weber Syndrome 3 Comments

I bet that I’ve ridden the stretch of US 35 North between Charleston, WV and Dayton, OH at least 100 times in my life.  It’s familiar.  I know where to expect the power plants, glimpses of the river, the convenience stores, and the grand farm houses as we make our way “home” to western Ohio. …Read More

Reese

October 20, 2008 by nohandsbutours birthmark, Family Stories, GWCA, Skin Conditions, Sturge Weber Syndrome, Vascular System 0 Comments

by Monica, big sister to Reese, from China, who has Sturge-Weber Syndrome We originally were aiming to go to China for a NSN girl, as young as possible. As we were gathering paperwork, some friends called us and said, “you have to look at these kids on your agency’s waiting list”. We did, and found …Read More