Finding My Peace with Sanfilippo – a Column by Emily Wallis

As a Sanfilippo sibling, I experience many emotions every day. Each feels like a weight on my shoulders, and it takes a balanced mindset to juggle all of them. This is something I still struggle with. My sister, Abby, has Sanfilippo syndrome. It is a rare, terminal disease that currently…

The photo below is one of my favorites of my sister and me. It was taken at my grandparents’ house several years ago, and it often brings me comfort because you can clearly see the love between us. Sanfilippo syndrome takes a lot of things away from our relationship, but…

My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as one part per million! As I contemplated this column, this shark fact, a Sanfilippo event I attended last month,…

It’s important in all aspects of life to find your people. For example, I have my teacher friends, my college friends, and now, we have our Sanfilippo warriors. When someone you love is living with a rare, terminal disease, it’s an indescribable feeling to find people who are walking a…

The four years since my sister, Abby, was diagnosed with Sanfilippo syndrome have been a journey, to say the least. She has lost most of her speech and will continue to lose basic life skills as the disease progresses. Our family has had to adjust to a new normal…

My sister Abby has a rare, neurodegenerative disease called Sanfilippo syndrome. She was diagnosed in 2017, and life hasn’t been the same since. I’ve spent considerable time reflecting on my role as her sister, not only as a Sanfilippo sibling, but also as an advocate to spread awareness of…

This year’s Thanksgiving was difficult. I lost my grandmother in March, so grief overshadowed a lot of the gratitude that should be at the forefront of this holiday for me. However, having grief at the center of Thanksgiving, among other holidays, is common for those affected by terminal…

You live with many fears when a family member is diagnosed with a terminal disease. However, there is a specific fear that comes with being the sibling: What if I move away from home and something happens to my sister? Sanfilippo syndrome, a rare, terminal disease known as…

Since moving out of my house and away from my sister, I’ve been more cognizant of making sure she knows I love her. It’s hard to know if she understands the “little things” I do to express that, but each time I go home, I make sure I get…

It has always been relatively easy to make new friends. I take kindness very seriously, and I try to be as friendly as humanly possible. The hard part isn’t striking up a conversation or finding things to talk about, but rather knowing when to bring up my sister, Abby.