Life Never Stops with Sanfilippo Syndrome

Life Never Stops with Sanfilippo Syndrome
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The current state of the world is difficult for everyone. I’ve thought a lot about my sister, Abby, my family, and other Sanfilippo families. It’s been the perfect time to reflect on what our life is like behind closed doors.

Last night, my mom was upset as we sat and discussed funeral plans for my grandmother who recently passed away. Just next to us was an iPad showing the live camera in my sister’s room, so we can watch for when she gets out of bed.

This image is the perfect way to describe what living with Sanfilippo is like. It’s simple: Life never stops.

In 2016, I left for college. My sister was diagnosed with Sanfilippo syndrome in 2017, and my mom’s cancer metastasized the same year. I was in college when these major things happened. Two months ago, my grandmother passed away. It was one of those dates, such as those from 2017, that will forever be ingrained in my brain because it was so devastating. But this time, I was home.

I can vividly remember the morning after my grandmother passed away. I sat on the back porch because hearing my sister’s incessant happy chatter infuriated me. It was such a conflicting feeling because she did not understand what had happened, but my overwhelming grief and its rawness did not care. Joy was intolerable.

I reflected a lot that morning, and I thought about the day my mom’s cancer metastasized. I had the opportunity to sit and process my emotions on that day in 2017 because I was at college. My parents, on the other hand, did not. Abby’s sweet smile, completely unaware of what was going on, must have been difficult to mirror, but they did.

Sanfilippo does not make accommodations.

Families like mine are faced with a variety of hardships every single day, and one that unites us all is that life does not stop with Sanfilippo. I would never want to make my sister or any other child with Sanfilippo seem like a burden on their families. That is not my intention whatsoever. Our care for Abby is simply our life.

This is the best way I can describe what goes on behind closed doors for my family. We’re never able to hit pause on Abby’s needs, even when life hits its lowest points.

During the pandemic, many are catching a glimpse of what life is like in a Sanfilippo home. This is what I have reflected on as I try to make connections between normal life and Sanfilippo life. The world has stopped, but lives have not. It is frustrating, difficult, and often overwhelming.

Reach out to those dealing with a disease or circumstance that doesn’t pause when everything else seems to do just that.

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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 Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.

Emily is a 22-year-old first-grade teacher. Her sister, Abby, has the rare neurodegenerative disease Sanfilippo syndrome, which has been coined a “childhood Alzheimer’s.” She is a Houston, Texas, native and enjoys all types of writing, spending time with her family and friends, and learning something new every day. In this column, she shares the ups and downs of caring for Abby.
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Emily is a 22-year-old first-grade teacher. Her sister, Abby, has the rare neurodegenerative disease Sanfilippo syndrome, which has been coined a “childhood Alzheimer’s.” She is a Houston, Texas, native and enjoys all types of writing, spending time with her family and friends, and learning something new every day. In this column, she shares the ups and downs of caring for Abby.
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