“Hi, I’m Stacey, @thegutsycrohnie, and this is our beautiful daughter Iris Ann. We live on the beautiful island of Kauai and we love all things adventure. It’s scary to … READ MORE

“After four months of weekly appointments trying to investigate why Harper’s body seemed to be getting weaker by the day, we were given a terminal diagnosis of Spinal Muscular Atrophy … READ MORE

“Hello! My name is Eric and I was a problem child. At seven years-old, having already had a track record for giving my teachers gray hairs, my parents submitted me … READ MORE

“Our rare patient story starts at the end of October 2019 when our second born Morgan was born and finding out five days later from her newborn screening she had … READ MORE