Reflecting on my role as a ‘big’ little sister to my Sanfilippo sibling

Recently, my parents created a TikTok account dedicated to my sister, Abby, who has Sanfilippo syndrome. One video they shared had pictures of Abby and me at different ages. As I scrolled through the comments, I saw one noting that I had gone from being Abby’s little sister to being her big sister. That stuck with me and led to lots of reflection.

Sanfilippo syndrome is a rare, neurodegenerative disease that has stolen most of Abby’s basic life skills. I am 25, and Abby is about to turn 28. Although she is older, Sanfilippo has flipped our roles. At a young age, I became Abby’s “big” little sister.

Abby used to participate in activities including the Special Olympics and taekwondo. On many occasions, she would refuse to get out of the car after we pulled up to an event. She would sometimes do the same at school. It was something we eventually came to expect, and as the little sister, I was often the frustrated back-seat passenger.

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In high school, I drove Abby to school every day. We would walk in together, then I would walk her to class before going to mine. At the end of the day, when the bell rang, I would pick her up from class and take her home. I was resentful of these responsibilities for longer than I’d like to admit. It’s a period of my life that I reflect on often.

Near my high school graduation, it was clear that Abby was declining. We mostly noticed her speech disappearing, among other things. I was scared, so I knew that she was, too. There was an added weight to being Abby’s sister. I needed to understand, more than ever, that my role in Abby’s life was special. I had to be the protective, loving, and strong big sister to her.

Those are really big feelings to work through as a kid. I fought feelings of jealousy, anger, and even resentment toward my life. I resented the fact that I didn’t have a “normal” sibling relationship.

Despite this, I cherish that time we had together — our after-school trips to Sonic, our dance parties in the car, and especially her interactions with my friends when they saw us together. When I reflect on my role in Abby’s life, I love looking back at that period of time.

When Abby was diagnosed, I looked at our relationship differently. So many emotions needed to be processed, and I believe this was one of them: Being Abby’s sister meant something completely different now.

I’m thankful for the reflection I have done on our relationship. As Sanfilippo continues to take Abby from us, it can never take these memories away. Being Abby’s “big” little sister is one of my proudest titles. What a privilege it is to be Abby’s sister, playing such a special role in her life.

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.