I wish I had a sibling support group in the Sanfilippo community

How I worry about leaning too much on my helpful friends and family

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by Emily Wallis |

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While chatting with a friend recently, I found myself talking about my sister, Abby, and my fears regarding her future. Abby has Sanfilippo syndrome, often referred to as a childhood Alzheimer’s. At 27 years old, she’s lost most of her basic life skills, and she’ll eventually lose her life.

Abby has an attenuated case of Sanfilippo, which means its progression is slower. She’s much older than most living with the disease, which makes me older than most Sanfilippo siblings. That’s part of what puts me in a rare and difficult position.

My family recently met a couple whose granddaughter had been diagnosed with Sanfilippo syndrome. We told them so much about community and how wonderful it is to have people around who can relate to what you’re thinking or feeling. As we discussed our Sanfilippo community, I realized how much I’m affected by not having a group of other siblings to lean on.

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Don’t get me wrong — so many wonderful resources are out there for siblings of special needs individuals, and some specifically for Sanfilippo. But on those really hard days, I find it difficult to go without a community of people who can understand my fears and struggles as a Sanfilippo sibling.

That said, I have an incredible support system. My parents and extended family are always willing to talk with me, as are my friends. However, I often worry about how it affects my relationships. Do I complain too much? Am I going on about myself or my struggles too often?

This particular conversation prompted me to do a lot of self-reflection. Because I don’t have a sibling community to turn to, I rely on those around me. Do I do that too much? That fear follows me everywhere, especially now. I worry that my struggles stand in the way of me being a good friend, family member, and co-worker.

Thankfully, all of this reflection brought me to a place of peace and self-awareness. I know about the weight on my shoulders, acknowledge that my sister’s disease is slowly taking her away from us, and recognize the heavy emotions that don’t ever seem to leave my mind, given what Abby and my parents go through every day.

I’m also at peace in realizing that not everyone can or will bear this weight with me. It’s heavy, and it’s not theirs to carry. I’ve built my own community of kind, strong, and loving people who are willing to stand with me when I need it. They do everything they can to understand what life is like for a Sanfilippo sibling.

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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