On Sanfilippo Awareness Day, I’m thankful for those who care

An amazing community joined us for this year's 'Purple Week' events

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by Valerie Tharp Byers |

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It was a cool spring night in early 2015 when we received the worst news of our lives. Our son, Will, had been diagnosed with Sanfilippo syndrome. How were we going to face this new journey?

Within a few hours, we knew we wouldn’t have to face it alone. We had told a few friends and family members about Will’s diagnosis and they sprang immediately into action, planning how to help, raise funds, and be by our sides to battle this invisible foe.

I remember being so overwhelmed by the diagnosis and was unable to process all the support. I felt the love and the energy, but I also wondered how long those around us could sustain it? This was our son, our journey, and it would be for the rest of our lives. How could we expect anyone else to invest this deeply in our family and support us, not just in the coming days, but also in the coming years?

But they have. Eight years later, and they still show up for us.

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It’s all about WILLPower

World Sanfilippo Awareness Day was Nov. 16. We observe it with our annual “Purple Week,” a series of events that include Spirit Nights at local restaurants and retail stores to help raise awareness and funds for the Cure Sanfilippo Foundation. We also ask our supporters to wear purple or WILLPower gear. These events are important because they let us feel less helpless in the face of our son’s diagnosis. They remind us that we have the power to do something to impact Will’s care and quality of life.

This year’s Purple Week was a little more difficult, however. Several of Will’s classmates went home sick at the beginning of the week and, sure enough, Will woke up with a fever and cough the next day. We were faced with contending with an ill kid along with the events we had scheduled.

Will isn’t able to tell us how he feels, but his symptoms remained mild, and my husband and I were able to divide and conquer childcare and Purple Week. Even so, my focus was divided and I didn’t feel as energized as I usually do for World Sanfilippo Awareness Day. I was tired, nervous, and overwhelmed with worry about Will’s health since small illnesses can quickly turn into big problems for children with Sanfilippo. I worried that I hadn’t put in the amount of work I usually do and wondered if we’d still be able to pull off our events.

A group of people wear WILLPower shirts as part of World Sanfilippo Awareness Day.

WILLPower supporters show their solidarity on World Sanfilippo Awareness Day. (Courtesy of Valerie Tharp Byers)

My worries were immediately put to rest as the amazing community we’ve been able to cultivate showed up again and again and again. People attended our events. People wore purple. People called and texted to check in on Will and our family. And not just those people who were first told of Will’s diagnosis. We’ve been so fortunate to continue to meet people on our journey who have embraced our family and joined our story.

In this season of thanksgiving, we are so grateful to everyone who has stuck by us these past eight years, and who continue to support us. Their continued care and presence make such a difference in our lives. Just seeing people wearing a purple shirt helped lift our spirits during a difficult week.

We know we are not alone.

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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