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…
Finding My Peace with Sanfilippo – a Column by Emily Wallis
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…
Recent Posts
- Bone marrow transplant helps hand-eye coordination in Sanfilippo child
- The support system that allows my special needs child to thrive
- Enzyme therapy directly into the brain tested for Sanfilippo type D
- I’m finally seeing a therapist, 3 years after my daughter’s diagnosis
- Tralesinidase alfa ERT for Sanfilippo type B children put on fast track
- Educating others about Sanfilippo syndrome, one bite at a time
- Teen’s acute psychotic disorder leads to Sanfilippo A diagnosis
- Feeding our toddler with Sanfilippo syndrome can be stressful
- It’s hard to stay positive when Sanfilippo is so cruel
- Heart condition SSS found in Sanfilippo patient for first time