Finding My Peace with Sanfilippo – a Column by Emily Wallis

Emily is a 22-year-old first-grade teacher. Her sister, Abby, has the rare neurodegenerative disease Sanfilippo syndrome, which has been coined a “childhood Alzheimer’s.” She is a Houston, Texas, native and enjoys all types of writing, spending time with her family and friends, and learning something new every day. In this column, she shares the ups and downs of caring for Abby.

Sanfilippo Syndrome Robs Me of Closure

I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often would become jealous of the extra attention she received, and it weighed on me for many years. When Abby was diagnosed with Sanfilippo syndrome, a rare…

It’s Time to Deal with My Anxiety

I’ve known for a long time that I have anxiety. For obvious reasons, it hit an all-time high when my mom was diagnosed with cancer and my sister with Sanfilippo syndrome, which is terminal and has no cure. From that point on, I constantly worried about the future.

Life Never Stops with Sanfilippo Syndrome

The current state of the world is difficult for everyone. I’ve thought a lot about my sister, Abby, my family, and other Sanfilippo families. It’s been the perfect time to reflect on what our life is like behind closed doors. Last night, my mom was upset…

I Find Comfort in Believing Loss Can Bring Peace

I’ve experienced several defining moments in my life over the last five years. My mom was diagnosed with cancer in 2015 as my senior year of high school began. We received my sister’s diagnosis of Sanfilippo syndrome, a terminal illness without a cure, in 2017 — the same…

Finding Your Home Base in an Uncertain World

My favorite part of writing columns for Sanfilippo News is the opportunity to reach people both in and outside of the Sanfilippo community. In this quarantine, we’re all sort of in the same boat. We’re locked in our houses, anxiously watching the news and wondering when exactly we’ll be able…

Finding the Unity in Disability

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find…