As a Sanfilippo sibling, I struggle with our family’s uncertain future

Considering the unknowns and 'what ifs' as my sister's disease progresses

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by Emily Wallis |

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At 25 years old, thinking about my future is scary. It will be filled with many life changes and milestones. As a Sanfilippo sibling, my future will also be filled with devastating loss and grief.

At 28, my sister, Abby, has Sanfilippo syndrome, a rare, neurodegenerative disease. It has already taken Abby’s basic life skills, leaving her unable to do anything without assistance. Sanfilippo will eventually take Abby’s life.

Since I moved out of my parents’ house a few years ago, I’ve become much more aware of Abby’s decline. She is noticeably less steady on her feet and has no functional words left to communicate with. Getting her into the car to go places is nearly impossible, and there seems to be a new challenge every time I visit.

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Weighing the ‘what ifs’

When I go home and see Abby, it often makes me emotional to think about her future. The reality is that we don’t know how long she has left with us.

Abby has an attenuated, or slower progressing, case of Sanfilippo. She is significantly older than most kids with the disease, making me much older than other siblings in our community.

Given her situation, my family faces unique challenges regarding the future. I have to acknowledge the fact that I could be Abby’s primary caregiver should my parents one day be unable to care for her. How does Abby potentially fit into my life as I get older? I imagine her in my future home, interacting with my future husband and children. The idea of my future children bonding with Abby over Disney movies or music brings me so much joy.

But I have to consider how she will change. Will she still be able to enjoy the same things? She will still require assistance as she does now, but as the disease progresses, so will her needs. Because Abby and I are older than most Sanfilippo children and siblings, these thoughts can be quite isolating, and it often feels like I’m navigating these challenges on my own.

I also must imagine a future without her. What will life be like? How will our family dynamic change? The “what ifs” and unknowns are heavy and incredibly overwhelming. There are no answers yet. I don’t know when that day will come, or what the future holds.

Some days, the questions win. I’m overcome with anxiety and panic about the uncertain future. Recognizing those emotions is important, but so is living in the present. Seeing Abby’s smile or hearing her laugh at her favorite show becomes more precious as time goes on. The unknown forces me to recognize these moments and appreciate them.

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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