Living My Own Life as a Sanfilippo Sibling

Emily Wallis avatar

by Emily Wallis |

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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 “childhood Alzheimer’s,” can be unpredictable. We don’t know how long we have with Abby, and that’s how we approach each day with her. We love her and give her the happiest life we possibly can. This often weighs on my mind when I think about the future.

Even without my sister Abby’s Sanfilippo syndrome, being far away from my family is hard. We have always been incredibly close, so it’s difficult to think about taking my own path. Being close with my family is very important to me, but it makes growing up that much harder. This becomes more complicated as a Sanfilippo sibling.

My parents have always encouraged me to venture out and live my life despite my sister’s condition. They remind me that I am my own person and deserve to live up to that potential. But separating those two things is difficult.

As a sibling, there are a lot of feelings of guilt that come with “venturing out” and living my own life. I feel guilty for leaving Abby and I feel guilty for leaving my parents. Why am I out here living my life without my sister? Why am I able to leave my parents and everything they have to handle so I can build my life?

Just a couple weeks ago, Abby had a seizure, and I wasn’t there. It was so difficult reading about the seizure online rather than being there to hold Abby’s hand or help her get back up.

Despite only moving about an hour away from home, that guilt still finds and haunts me at times, especially on days like that one. Those days remind me of the unpredictability of Sanfilippo syndrome. How would I feel if something more serious happened, and I wasn’t there? The guilt would presumably eat me alive. That is one of my deepest, darkest fears.

It’s easy to tell myself that I deserve to live my own life apart from being a Sanfilippo sibling. It’s easy to move away and begin my own independent life. It is not easy to fight those what-if questions. They follow me, and will follow me, wherever I go.


Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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