Saving Liv
— Erin Stoop

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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.

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How I answer kids’ questions about my daughter with Sanfilippo

“Is she a baby?” a child asks, pointing to my 6-year-old daughter with a pacifier in her mouth at the park. “No, she’s 6, but she likes to put things in her mouth that she shouldn’t, like wood chips and rocks, so the pacifier helps keep her safe.” Liv…

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Hope and anguish collide with news of the first Sanfilippo treatment

On Sept. 13, “7News Spotlight” aired a special investigation titled “‘Miraculous in her averageness’: The young girl who could hold the key to curing dementia.” It highlights a beautiful 9-year-old girl from Australia named Tilly who has Sanfilippo syndrome. This neurodegenerative, terminal, genetic disorder is often referred to…

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My son is starting to ask questions about his special needs sibling

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…

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Moving may be good for our daughter, but the thought of it seems daunting

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…

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Thinking about my daughter’s future includes planning her funeral

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…

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Accepting my daughter’s Sanfilippo diagnosis has allowed me to heal

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…

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I’m a wife and mom to a special needs child, but what defines me?

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…

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Screen time is a lifeline for our daughter with Sanfilippo syndrome

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…

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Being a Sanfilippo parent means facing impossible decisions

“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?…


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