Saving Liv — Erin Stoop

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…

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…

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…

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…

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,…

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…

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…

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 how special Liam, Liv’s brother, is. Someone commented on my post, reminding me to pay extra…