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.

When I Think of My Family, I Often Worry

I have always struggled with anxiety. I have also always been close to my family. When my sister, Abby, was diagnosed with Sanfilippo syndrome — a terminal illness with no cure — those two things teamed up to challenge my mental health in a way I’d never experienced before. When…

Emotional Nights at Home With My Sister

Since I moved out of my parents’ house, I love coming home on the weekends. I get so excited driving home and thinking about spending much-needed time with my family. My sister, Abby, has Sanfilippo syndrome, a rare, terminal disease that currently has no cure. Along with other…

Remembering the Holidays Before Sanfilippo

The holidays can be a difficult time for me. My sister, Abby, was diagnosed with Sanfilippo syndrome four years ago, and since then, I find my heart pulled in two directions during the holiday season. On one hand, I’m grateful for the years I had with her before Sanfilippo…

Am I a Carrier for Sanfilippo Syndrome?

I received a package in the mail last week. It was a test that I will be able to take and send to a lab to find out if I am a carrier for Sanfilippo syndrome. My sister, Abby, has this rare and terminal disease for…

Finding Balance Among My Many Emotions

As a Sanfilippo sibling, I experience many emotions every day. Each feels like a weight on my shoulders, and it takes a balanced mindset to juggle all of them. This is something I still struggle with. My sister, Abby, has Sanfilippo syndrome. It is a rare, terminal disease that currently…

Sanfilippo Families Are in This Fight Together

It’s important in all aspects of life to find your people. For example, I have my teacher friends, my college friends, and now, we have our Sanfilippo warriors. When someone you love is living with a rare, terminal disease, it’s an indescribable feeling to find people who are walking a…