Columns

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…

Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs? My oldest daughter, Abby, has Sanfilippo syndrome. Her sister, Emily, is unaffected. Emily is incredibly smart, beautiful, kind, and…

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…

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better. But if you have experienced a sad event, you can’t avoid it. You wake up thinking about it, and it is…

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…

My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was diagnosed, I received the news that I had cancer, so my family was already in “adaptation” mode. We had shifted to…

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…

My daughter Abby was 22 when she was diagnosed with Sanfilippo syndrome. We were devastated. Like any other significant event, things are now classified as “before” or “after” the diagnosis. Abby was somewhat self-sufficient as a child. She could eat by herself and get dressed with some assistance. She…

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…