Saving Liv - a Column by Erin Stoop

My son, Liam, has started asking more questions about why his sister behaves differently from his friends. I knew this time would come, when I’d have to start answering the “why” questions. My daughter, Liv, has Sanfilippo syndrome, a neurodegenerative genetic disorder. She is 6 years old, but her…

When we received my daughter Liv’s Sanfilippo syndrome diagnosis four years ago, my mind raced with all the changes that would come — the therapies and medical appointments — and just how different her future suddenly looked. In an instant, her diagnosis had changed our lives forever. Liv was…

As morbid as it sounds, I sometimes find myself thinking about my daughter’s death and funeral. In 2022, Liv was diagnosed with Sanfilippo syndrome, a terminal, neurodegenerative, genetic disorder. Today, she is 6 and doing well, all things considered, but this diagnosis has felt like nothing short of a…

I am now at peace with my daughter Liv’s terminal, neurodegenerative, genetic disorder. Over four years ago, at age 2, she was diagnosed with Sanfilippo syndrome. Liv was still gaining skills at the time, but we were told that soon, it would shift, and she would start regressing and…

Remove my roles of pharmacist, wife, and a mom to two kids, and who am I? What else defines me? This was the question presented to the parents of kids with Sanfilippo syndrome in a group therapy session recently. All the parents in the group have children with the…

As a parent, I’ve met other moms who are proud that their children are “screen-free,” meaning they aren’t allowed to watch television on a tablet. I can’t relate in the least. My 6-year-old daughter, Liv, thrives with screen time. She has a degenerative genetic disorder called Sanfilippo syndrome, which…

“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…