Finding My Peace with Sanfillipo — Emily Wallis

Last week, my mom and I attended a fundraising event for the Cure Sanfilippo Foundation. It was an opportunity for us to spread awareness about Sanfilippo syndrome — a rare, terminal…

At 25 years old, thinking about my future is scary. It will be filled with many life changes and milestones. As a Sanfilippo sibling, my future will also be filled with devastating loss…

While chatting with a friend recently, I found myself talking about my sister, Abby, and my fears regarding her future. Abby has Sanfilippo syndrome, often referred to as a childhood Alzheimer’s. At…

Recently, my parents created a TikTok account dedicated to my sister, Abby, who has Sanfilippo syndrome. One video they shared had pictures of Abby and me at different ages. As I scrolled…

As a Sanfilippo sibling, I grew up with my sister, Abby, who is two and a half years older than me. We lived in the same house for about 20 years, so we…

I have a job that I love. This is my third year teaching first grade, and it’s rewarding and challenging in so many ways. From day one, my students (or my “kiddos,” as…

I’m a teacher, so the word “summer” invokes thoughts of relaxation and letting go of responsibilities. During summertime, many people take advantage of the time off and go on vacation with their families…

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…

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,…

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…

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…