Saving Liv — Erin Stoop

“What would Liv want?” This is a question I ask myself every day. Our 6-year-old daughter, Liv, has a neurodegenerative genetic disorder called Sanfilippo syndrome. She can no longer say yes or no, point to what she wants, or even nod her head. What does she want to wear?…

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…