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…
Saving Liv - a Column by Erin Stoop
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…
“I can’t wait to be out of the diaper phase,” I remember thinking as we prepared to potty train our daughter, Liv, when she turned 2. I think it’s natural for any parent to look forward to the next phase, even though the next phase always comes with a new…
“I think Liv has a lysosomal storage disorder,” the text message read. It was from a stranger — a pediatric neurologist and friend of my sister-in-law — who had seen a photo of our daughter, Liv, on Facebook. Liv was 2 at the time and had been through several tests…
Recent Posts
- I’m a wife and mom to a special needs child, but what defines me?
- FDA decision on UX111 gene therapy for Sanfilippo expected in September
- Screen time is a lifeline for our daughter with Sanfilippo syndrome
- Physical therapy eases pain, improves life for Sanfilippo kids: Study
- Being a Sanfilippo parent means facing impossible decisions
- UX111 gene therapy shows long-term benefit in Sanfilippo type A: Trial data
- Our respite caregiver provides much-needed help
- Study says U.S. Sanfilippo societal cost will top $2B over 20 years
- Bone marrow transplant helps hand-eye coordination in Sanfilippo child
- The support system that allows my special needs child to thrive