How Does Sanfilippo Syndrome Affect My Daughter’s Awareness?

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by Kelly Wallis |

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My cancer has returned. My schedule is filled with chemotherapy and doctor appointments again. Currently, I receive chemotherapy infusions every other week, and my understanding is that this will be my life going forward until I decide I need a break. I have an inoperable tumor right next to my heart, so to prevent the cancer from spreading, chemo is my only option.

A chronic illness such as cancer affects day-to-day life for all immediate family members. My husband, Jeff, is doing double duty now. He cares for Abby, our adult daughter who needs constant supervision due to Sanfilippo syndrome, and me, all while working a full-time job. Emily, our other daughter who no longer lives with us, comes over to help during the summer while she has a break from teaching.

A household that includes a family member with a terminal disease is already fragile. Adding cancer into the mix complicates things even more.

I often wonder how this affects Abby. Is she aware of what is happening?

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The Challenges of Caring for an Adult With Sanfilippo Syndrome

Symptoms of Sanfilippo syndrome are often compared to symptoms of dementia. Abby’s cognitive abilities have declined significantly over the years. Specifically, she has lost the ability to communicate verbally, making it difficult to know how she’s feeling. So we’re curious to know if she senses or understands the changes going on around her.

Chemotherapy brings many side effects, both visible and invisible. The most noticeable change for me is hair loss. Mine started falling out after the second treatment, so my husband shaved it off for me. Does Abby notice the change? She hasn’t stared at me longingly, as if to question who I am or why I look different. She also hasn’t reached out to touch my head, so I really don’t know what she thinks about it.

The other significant side effect I’m experiencing is fatigue. Before chemo, I was usually buzzing about the house, tidying up, or doing laundry; now, fatigue mostly confines me to bed for a week after treatment. Does Abby wonder why I’m not around as often? Why is Dad doing almost everything now?

I recently heard a sermon at my church that mentioned the concept of “tribe” — how humans yearn to find a tribe to which they belong. I love the idea of a tribe surrounding Abby that includes extended family and friends who love her and us. Can ours ever be big enough? Probably not. We’re always trying to grow the community of people who support us. And with us being one man down, now is a great time to invite others to join our tribe. Consider this your invitation!

Note: Sanfilippo Syndrome 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 Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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