Connecting with other Sanfilippo families provides us comfort

The value in talking with others who understand what you're going through

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by Kelly Wallis |

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My family recently had the pleasure of attending a gathering sponsored by the Cure Sanfilippo Foundation, a nonprofit that leads the charge in research, advocacy, and support for those affected by Sanfilippo syndrome.

Eight children with Sanfilippo attended with their families. Several of us had connected via Facebook groups for parents, but most of us had never met in person. We found it so interesting to speak with other parents and see the similarities between all the kids.

My 28-year-old daughter, Abby, was the oldest “child” there. The average life expectancy for people with Sanfilippo syndrome is in the teens, an age Abby has well surpassed because she has an attenuated, or slower progressing, form of the disease. It’s the only reason she’s still alive.

The youngest children reminded me of Abby as an adolescent. Their hyperactivity and spunky attitudes energized the event! The older children were a little more subdued, but still appeared happy and aware of everyone around them, especially when you got on their level and spoke to them.

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All the parents visited with one another. I overheard several conversations and could tell the adults found it comforting to empathize with each other. Parenting a Sanfilippo child is quite exhausting, both physically and mentally, but talking with other parents somewhat alleviates this exhaustion.

These conversations were free of inhibition and fear of judgment. Knowing the other person completely understands what we’re going through is such a comfort. There’s no need to provide a backstory or explanation of the disease; we can hear one another and affirm the other’s feelings. That’s invaluable.

We were all together in a room, and almost all the families entered with their kids in either a wagon or a stroller. We do that to confine them, as our kids have a tendency to run off and escape. Common characteristics of Sanfilippo children are hyperactivity and a poor sense of safety, and strollers and wagons are great ways to counter these symptoms.

At one point toward the end of the event, some parents let their children out to run around. The kids would randomly yell out nonsensical words or phrases, but none of the families were fazed. It was awesome, because the parents had no worries in this context. We all understood, whereas most parents in a typical public space might stare or judge.

My hope is that this group of parents stays connected. We’re all enduring similar circumstances and can help build each other up. I thank the Cure Sanfilippo Foundation for funding this event, along with several others across the country. These gatherings are helping families connect and support one another, and we all need that to continue fighting for our children.

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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