Patient Stories

Guest Post When my daughter was diagnosed at six with Wiedemann Steiner Syndrome, we already knew we were on a rare path. She had missed milestones, communicated in unique ways, and displayed biological markers of a rare syndrome. I was learning on the fly and seeking out support wherever I could find it. The problem…

In life, you’re given a gift; confidence. What you do with that gift is up to you and only you. In my life I have also been given a few other “gifts” that I didn’t ask for, opened, and now I have to deal with them. At age 15 or 16 I, as well as…