Columns

The Devastating Phone Call that Confirmed My Sister’s Diagnosis

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’s Journey to a Diagnosis

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…

Finding Peace with My Sister’s Diagnosis of Sanfilippo Syndrome

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…