Finding My Peace with Sanfilippo – a Column by Emily Wallis

The rare disease community includes some of the strongest people I know. Upon entering this clan in 2017, after my sister, Abby, was diagnosed with Sanfilippo syndrome, I found comfort in reading works by other rare disease siblings and family members. When I began this column in 2019,…

I’ve written a lot about the past. My relationship with Abby, my sister, hasn’t always been the best, and it’s something I think about often. As I reflect on my relationship with her, I think about one of the biggest turning points, and how grateful I am for that period…

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 disease that has no cure — to many people who weren’t familiar with it. A slideshow…

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 and grief. At 28, my sister, Abby, has Sanfilippo syndrome, a rare, neurodegenerative disease. It has…

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 27 years old, she’s lost most of her basic life skills, and she’ll eventually lose her…

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 through the comments, I saw one noting that I had gone from being Abby’s little sister…

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 made lots of memories together. I often view my life in parts, as if it were…

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 call them) learn that kindness is our classroom’s golden rule. I remind them each and…

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 or do other fun activities. But families who are affected by Sanfilippo syndrome never have…

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…