Saving Liv - a Column by 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.

How my daughter with Sanfilippo handles birthday parties

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 a 1 year old. That makes play dates and birthday parties a large challenge. Liv…