Emily Wallis,  —

I spent a lot of time with Abby a couple of weeks ago. Her caregiver was sick, so I knew I’d be spending several days with her. I had two options: I could be angry at Sanfilippo syndrome, which makes caregiving necessary in the first place, and fall…

It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. Some may argue that feeling low for a few hours shouldn’t qualify as an episode, and I’m not trying to diminish the severity of depression. However, the crippling…

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store and what next Jan. 1 will look…

In this column, I want to focus on a word that has been particularly difficult for me to talk about in the past. While it has synonyms such as envy or desire, this week I’m writing about the “J” word: jealousy. It’s hard not to be jealous sometimes when particular…

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…