Our lives before and after my sister’s Sanfilippo diagnosis

With memories to cherish, we hold the present tight and await the next chapter

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by Emily Wallis |

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As a Sanfilippo sibling, I grew up with my sister, Abby, who is two and a half years older than me. We lived in the same house for about 20 years, so we made lots of memories together.

I often view my life in parts, as if it were on a timeline. I remember when Abby and I could have conversations, a period when she was declining and we didn’t know why. Now I see Abby live with Sanfilippo syndrome, a rare, terminal disease that has taken away her basic life skills.

Abby’s diagnosis was one of those significant moments that changed our family forever. I recall Abby and I attending high school together and walking across the stage for our diplomas. Even then, we were nervous that she couldn’t make that walk. She’d already begun her decline.

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I recall a time when Abby would read every (and I mean every) sign we’d pass while driving. We would sing, dance, and have so much fun in the car together. As she got worse, we continued our car rides — they brought back the Abby I grew up with. The day-to-day, routine things we used to do are now my fondest memories as I think of all that this disease has taken from her.

Before Abby’s diagnosis, she could tell me what she did at school as I drove us home each day. She got into the car independently. We used to go to dinner as a family, and we played games together. These are the times we hold so close to us since Sanfilippo has taken all of these abilities from her.

Since Sanfilippo, she’s required supervision at all times. She can no longer walk or eat dinner without assistance. She no longer speaks to us. We, as a family, have lived a completely different life ever since.

The most difficult part of this timeline is one that I haven’t experienced yet. I know this diagnosis ends with Abby not being here anymore. We know what awaits us. Being a part of the Sanfilippo syndrome community, you’re reminded of these short timelines. Our community has recently lost three lives to this terrible disease. Every day, you’re reminded that each day is not promised.

As a Sanfilippo sibling, I can separate my life into before and after her diagnosis, or before and after she lost her speech. Any day, we may enter the next “before and after.” Eventually, we’ll come to the end of the timeline. Until then, we cherish each and every moment we have with Abby.

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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