My Sister Can’t Verbally Communicate, but Her Eyes Tell a Story

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by Emily Wallis |

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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 this picture reminds me that love isn’t one of them.

My sister, Abby, 25, has Sanfilippo syndrome. It is a rare, terminal disease that currently has no cure. One thing this disease has taken from Abby is her speech. She still says words, but they don’t hold very much meaning.

I had a hard time coming to terms with Abby’s speech loss. After I got my driver’s license, I would drive the two of us to high school every morning during my senior year. I remember going to Starbucks or Sonic and driving around in the car before heading home for the evening.

Even when our relationship was difficult, we still made each other laugh or talked about our day. Our conversations reassured me that we had a strong relationship, regardless of any obstacles — particularly the guilt that I’ve discussed in previous columns.

communication \ Sanfilippo Syndrome News \ Columnist Emily Wallis and her sister, Abby, sit on a living room chair and share a funny exchange in an older photo, before Abby lost her ability to verbally communicate.

From left, columnist Emily Wallis shares a funny moment with her sister, Abby, before Abby lost her ability to verbally communicate due to Sanfilippo syndrome. (Courtesy of Emily Wallis)

Once Abby lost her speech, I had to grieve this part of our relationship. It became much harder to accept that I am a good sister and give Abby enough of the love that she deserves. That’s why photos like this one bring me such comfort.

Abby says a lot with her eyes. When she looks at me, it feels as though she’s talking to me. It brings me back to those high school memories, pre-Sanfilippo. It provides me with an indescribable feeling of comfort and relief, as if she’s telling me to stop worrying about being the best sister.

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We get a glimpse of those eyes in this photo. I was probably joking around with her or saying something I knew would make her laugh, and someone snapped the picture at the perfect moment. When I look at her eyes, I see the relationship that I’ve always aspired to have with Abby. I see pure joy.

Although Sanfilippo has taken Abby’s ability to tell me things in words, pictures like this remind me that any negative feelings — such as guilt or frustration — have no weight on our relationship. It is wonderfully unique, and her eyes say it all.

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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.

Comments

Ann avatar

Ann

I started reading about this syndrome when a little girl on TikTok was diagnose with it. I have actually started reading more and more about it. Then, I came upon this article that says that Zolgensma.com, enzyme relacement therapy or gene therapy helps. My Mom had dementa so I know what that is like. So, in her honor I try to help everyone deal. Even when they can't speak it true there eyes do, never assume they don't understand because they do. My best to you and your family. Ana

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