Finding My Peace with Sanfillipo — Emily Wallis

I recently read a column about a teen whose brother has special needs. A lot of what the author said was spot on. She described what I experienced with my sister, Abby, when I was younger. As I read it, I thought about the small, often overlooked population of Sanfilippo…

I have a love-hate relationship with the phrase, “Everything happens for a reason.” I understand why people say it and what it means on the surface. But when faced with a disease like Sanfilippo syndrome, it’s hard to come to terms with it. The “reason” part…

My relationship with my dad has always been about tough love. He has very high expectations for me, we’re both quick-tempered, and we have plenty of disagreements. When I was younger, my dad was strict because he knew I was smart and should have behaved better. We had our share…

This week, I want to shed some light on a special group of people who carry me through this trying and emotional life as a Sanfilippo sibling: my friends. I didn’t know how my sister Abby’s diagnosis of Sanfilippo syndrome would affect my friendships. I was carrying…

Earlier this year, I wrote a post called “Special Sisters.” For this week’s column, I want to expand on some of the things I said about my special relationship with my sister, Abby. Growing up with a special-needs sibling, as I’ve mentioned previously, was (and is) difficult. It’s easy…

I have had many turning points in my life. I often divide my existence into “before” and “after” my mom’s and sister’s diagnoses, but I experienced another transformation after those milestones. Following the first diagnosis, my mom’s cancer went into remission, but the threat of metastasis loomed. I looked at…

No two diagnosis days are the same. The day the phone rings with news of a diagnosis hits everyone differently, even among members of the same family. I remember feeling two distinct emotions on my family’s diagnosis day. The clearest thing I remember is overwhelming guilt. It sat on my…

Hi! My name is Emily Wallis. Thanks for checking out my column. I’m excited about the opportunity to provide a window into my life as a Sanfilippo sibling. It’s a perspective that deserves attention, as we have many invisible struggles that are rarely discussed. One significant aspect of Sanfilippo…