Saving Liv — Erin Stoop

Banner image for "Saving Liv" 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.

Columns

Our respite caregiver provides much-needed help

Three years ago, a random dog roamed into our backyard, and a minute later, a woman arrived chasing after him. My husband helped corral the dog, the owner thanked him, and we went on with our day. A few days later, the woman reached out online after seeing the “Saving…

Erin Stoop

Columns

The support system that allows my special needs child to thrive

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…

Columns

I’m finally seeing a therapist, 3 years after my daughter’s diagnosis

I started seeing a therapist a few weeks ago. It’s something I’ve debated doing since my daughter, Liv, was diagnosed with Sanfilippo syndrome three and a half years ago. Many friends and family members mentioned that it would be a good idea, given the neurodegenerative and terminal nature of…

Columns

Feeding our toddler with Sanfilippo syndrome can be stressful

Many parents find feeding a toddler challenging, resulting in frustrating mealtimes. At this age, kids can be very picky and easily distracted. For our 5-year-old daughter, Liv, who has Sanfilippo syndrome, almost every meal is a struggle. As a nearly full-time stay-at-home mom, I tend to organize and prepare…

Columns

It’s hard to stay positive when Sanfilippo is so cruel

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, we took time off work and, through tears, shared the news with close family and friends,…

Columns

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…

Columns

I hadn’t anticipated being a stay-at-home mom, but it works for us

I used to be a career-driven woman. I graduated from pharmacy school in 2011, worked retail pharmacy for four years, then transitioned to a hospital setting and completed a post-graduation pharmacy residency. In 2019, when I became a mother eight years into my career, I envisioned myself as being a…

Columns

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, to be exact — for the Cure Sanfilippo Foundation. This money goes toward research and support…


Explore More Columns