This blog was written by Emily Wallis on Sanfilippo News. She has written many blogs about her experience as a Sanfilippo sibling and I would encourage you to read more.
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.
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.
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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