Saving Liv — Erin Stoop

When our daughter, Olivia, was diagnosed with Sanfilippo syndrome three years ago at the age of 2, it felt like a dark cloud had settled over our family. During the week that followed,…

My 5-year-old daughter, Liv, has Sanfilippo syndrome, a form of childhood Alzheimer’s. In her current phase of the disease, she’s hyper, impulsive, and has no sense of danger. Cognitively, she’s akin to…

It wasn’t until I started sharing the story of my daughter, Liv, and her Sanfilippo syndrome on social media that I heard the phrase “glass child” for the first time. I’d posted about…

It’s been more than three years since our daughter, Liv, was diagnosed with Sanfilippo syndrome type B. And in that time, our family has raised close to half a million dollars — $452,000,…

“I can’t wait to be out of the diaper phase,” I remember thinking as we prepared to potty train our daughter, Liv, when she turned 2. I think it’s natural for any parent to…

“I think Liv has a lysosomal storage disorder,” the text message read. It was from a stranger — a pediatric neurologist and friend of my sister-in-law — who had seen a photo of our…