I’m hopeful about the future of Sanfilippo syndrome type B
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,…
Saving Liv — Erin Stoop
Erin Stoop’s daughter Olivia (Liv) was diagnosed in 2022 at the age of 2 with mucopolysaccharidosis type 3B, aka Sanfilippo syndrome. Erin was working as a full-time spinal cord injury pharmacist, but as Liv’s medical needs increased, Erin stepped back to part time. She has enjoyed spending more time with her kids. They live in a suburb of Milwaukee, Wisconsin. Erin has been sharing Liv’s story on social media since her diagnosis and hopes to continue sharing the daily trials of parenting a child with a rare, terminal genetic disorder.
My daughter’s diagnosis with Sanfilippo syndrome type B
“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…
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