Finding My Peace with Sanfilippo – a Column by Emily Wallis

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…

Since moving out of my house and away from my sister, I’ve been more cognizant of making sure she knows I love her. It’s hard to know if she understands the “little things” I do to express that, but each time I go home, I make sure I get…

It has always been relatively easy to make new friends. I take kindness very seriously, and I try to be as friendly as humanly possible. The hard part isn’t striking up a conversation or finding things to talk about, but rather knowing when to bring up my sister, Abby.

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…

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.

I recently accepted a teaching position out of town, and am moving into a new apartment this week. As exciting as this is, I can’t help but be sad about leaving my family. Extra emotions come with being a Sanfilippo sibling, including the guilty feelings that accompany events like…

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’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…

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…

Last week, I passed an exam that will allow me to begin teaching this fall. I thought it would be fitting to reflect on how important teachers have been in my life, and how being a Sanfilippo sibling will make me a better teacher, just as it’s made me…