How Do You Prepare for an Unknown Future With Sanfilippo Syndrome?

A caregiver wishes she could better plan for her daughter's future challenges

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by Kelly Wallis |

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I sometimes wish I could see into the future. Would knowing the timing of events to come help me plan for them? It’s all about preparation.

I surmise that plenty of caregivers and parents of people with all sorts of special needs and circumstances would glance into a crystal ball to see the future if they had the opportunity.

Caring for my adult daughter Abby is becoming more challenging as Sanfilippo syndrome wreaks havoc on her body. The disease will eventually cause her body to shut down, but until then, our family must witness the slow process.

Having the ability to know when she’ll require more assistance would be helpful. This is the position my husband and I find ourselves in right now.

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Abby’s mobility is declining with time. She’s still able to walk and get around, but she cannot tell us how she feels or verbalize when she’s unsteady. When will she no longer be able to walk? We have to prepare for that time. But if we prepare too far ahead, are we in some way manifesting a faster decline? That’s what it feels like to me, but I realize it’s not completely rational.

Presently, one of Abby’s biggest challenges is getting into the car. The motor planning required is complicated when you break down every step.

First, she must approach the car and get close enough to it to put one leg inside. This step alone is incredibly hard for Abby. Then, positioning her body while she gets into the car is almost impossible for her now. She must balance on one leg while putting the other leg into the vehicle, and we have to help with every step of this, all while making sure no one falls. It’s quite an acrobatic feat!

This process is very frustrating for everyone, and doing it in the summer heat isn’t helpful, especially since Abby no longer sweats. This causes us to rush, which increases frustration, and I’m sure Abby senses it.

We barely take Abby anywhere anymore because of the work it takes to get her into the car. Then we feel guilty for never taking her anywhere, and this keeps the guilt cycle going.

Another common sign of disease progression in Sanfilippo patients is when they lose their ability to chew and swallow food. Abby doesn’t appear to be anywhere near this point, but it’s an acutely sensitive issue for Sanfilippo parents since it could result in her choking. And when Abby does transition from eating food to being fed via a feeding tube, she’ll need surgery to insert it. So planning is required.

Returning to my initial thought about being able to see the future, I’m fairly sure I would look into that crystal ball if I could. If I didn’t have Abby, and I didn’t have cancer myself, I might refrain. But any help in being prepared is appreciated. If only we knew what the future holds.

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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