My Sister’s Sanfilippo Syndrome Makes Our Relationship Unique

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 at least one little smile out of her!

My sister, Abby, has Sanfilippo syndrome, a rare disease sometimes referred to as childhood Alzheimer’s. Sanfilippo has robbed me of normalcy in many areas of my life, but one of the most difficult aspects is not being able to talk with Abby.

I talk to my mom and dad every day. We talk about our days, laugh, and I usually have something to rant about. I’ve always wondered what it would be like if Abby and I could talk or FaceTime every day like I do with my parents. What would we talk about? What would she sound like? Would her personality be the same as mine?

It’s difficult to fathom these things and not become angry at what Sanfilippo has taken, and will take, from Abby. This is why I make an extra effort when I go home to ensure she knows that she has a sisterly bond with me, even if our relationship is unlike any other.

That’s the beauty of our relationship. It is so far from normal, but that’s what I love about it. Who else can make their sister crack up just by running into her room singing “Itsy Bitsy Spider” like a maniac? Sure, we don’t go to the nail salon or talk about boys, but we go on drives and belt Disney tunes! In Abby’s eyes, I become the world’s funniest person when I scold the dog. It’s the little things. You have to find that joy.

Making Abby laugh is one of my favorite things for this reason. It lets me know that she is happy. Because she can’t speak to us, it’s difficult to know when she is truly happy. When she laughs or sings with me, it reminds me that although our relationship is so unique and sometimes difficult, we can still find joy, and I know she is happy with me. There is no better feeling than knowing this.

When I go home and see Abby, it’s those little things that remind me of her unconditional love. The smile of pure joy lets me know that she knows exactly how much I love her. It outweighs anything Sanfilippo has taken from us.

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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.