“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 daughter, Liv, on Facebook. Liv was 2 at the time and had been through several tests…
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.
A parent of a special needs child or someone who works in the public school system would undoubtedly be familiar with the letters IEP, which stand for Individualized Education Program. An IEP is a plan used to help ensure that a student with a disability receives accommodations, therapies, and goals…
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