Author Archives: Emily Wallis

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…

Grief Is an Unwelcome Visitor During the Holidays

This year’s Thanksgiving was difficult. I lost my grandmother in March, so grief overshadowed a lot of the gratitude that should be at the forefront of this holiday for me. However, having grief at the center of Thanksgiving, among other holidays, is common for those affected by terminal…

Living My Own Life as a Sanfilippo Sibling

You live with many fears when a family member is diagnosed with a terminal disease. However, there is a specific fear that comes with being the sibling: What if I move away from home and something happens to my sister? Sanfilippo syndrome, a rare, terminal disease known as…