The emotional toll of having a child with Sanfilippo syndrome

A columnist realizes she's been lugging around painful baggage for a long time

Kelly Wallis avatar

by Kelly Wallis |

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I recently had the fortunate opportunity to travel out of state to visit a dear friend. I have a disabled daughter who requires constant care and supervision, so it was a nice, yet brief, respite for me.

I’ve known this friend for many years. We attended middle school through college together, we’ve been in each other’s weddings, and we’ve maintained a close friendship for several decades. I say all of this to demonstrate that this friend knows me very well. We rarely see each other in person, but when we do, we pick up where we left off as if not a day had passed between visits. It is a rare, precious friendship that I treasure.

In one of our many conversations during this last visit, my friend noted that I seemed sadder in general. That surprised me, because I wasn’t aware that I appeared that way. But when I started to respond, I burst into tears and immediately started talking about my daughter Abby. She has Sanfilippo syndrome, a rare and terminal condition, and her health is declining over time. All that emotion was right there, barely under the surface, waiting to be let out.

I was even more surprised at how easily and quickly I’d become so emotional. It’s not like me at all.

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I’ve carried emotional baggage for a long time

Since the visit, I’ve thought a lot about that encounter. Why did I have such an emotional reaction? Do I need therapy? (It probably wouldn’t hurt!) Will this happen more frequently now? Am I going to become a blubbering mess every time someone asks me about Abby? Do I need a fresh inventory of my emotional state?

Returning to that conversation, I admitted to my friend that I was sad. What parent with a terminally ill child would answer differently? It’s an inescapable part of daily life in our house. I’ve also had cancer for more than eight years. It’s been at stage 4 for several years but remains stable for now. I was diagnosed in 2015, while Abby’s Sanfilippo diagnosis came two years later, so the topic of death and life-ending disease has loomed heavy for many years.

Time for self-reflection

Realizing what I just said is eye-opening! That’s an extraordinary amount of heavy, painful baggage to carry around for so many years. I live it, so I don’t consciously think about it all the time. But that conversation revealed that I’m more emotionally fragile than I’d thought.

What do I do with this knowledge? How do I navigate through all of these feelings and come out OK? I’ll think about that and report back soon. I’ve decided to embark on an inward journey of self. It’s slightly scary to think about what I might uncover, but it’s also necessary. Stay tuned!

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.


Jean Kegler avatar

Jean Kegler

Thank you, Kelly! Know that you are one incredible lady, wife and mother - and are loved by so many. Much love and many hugs...

Alice Kerr avatar

Alice Kerr

Find a therapist. You are carrying too much not to have one. For a very different reason, Alicia has had one for years and it has been such a blessing in her life. One of the best ways to take care of yourself.

Ally G. avatar

Ally G.

Thank you for this article, Kelly! It is quite validating for me as a parent who has a child with Sanfilippo Syndrome, as well. Your articles are more than relatable I always look forward to your posts. I wish you strength and grace as you navigate through this. I admire your commitment to your self-care and advocacy - we parents need that too! Let's all work to remove the stigma behind emotional fragility and allow those feelings to be expressed authentically, especially around those whom we trust and who love us! All the best, Ally G.


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