Sanfilippo won’t overshadow our holiday this year

The spirit of Christmas Present, with Santa and one another, will sustain us

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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I sat in rapt attention in the dim theater, taking in every sound and motion on the stage in front of me. My husband and I had done it. We’d managed to get a babysitter so we could got on an actual date and enjoy one of our favorite holiday traditions: a performance of Charles Dickens’ “A Christmas Carol.” The show never fails to renew our Christmas spirit and fill our souls with hope.

As the Ghost of Christmas Present walked across the stage, I stilled, preparing myself for the lines that hit me the hardest each year:

“I see a vacant seat in the poor chimney-corner, and a crutch without an owner, carefully preserved. If these shadows remain unaltered by the future, the child will die.”

My eyes sting with unshed tears as the truth of a line published in 1843 speared directly into my heart 180 years later.

Our son, Will, has Sanfilippo syndrome, a progressive and incurable rare condition. And if there’s no breakthrough in medicine, he will die too soon.

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Remembering the Holidays Before Sanfilippo

Reflection during the holidays

The lights are up, the tree is decorated, Pat (our Elf on the Shelf) is back, and we’re ready to celebrate another holiday season together, a blessing we can’t begin to quantify.

Rare disease or not, it’s only natural to find oneself reflective at holiday time. With the year ending, you can’t help but look back over the challenges you’ve faced and the memories you’ve made.

Although there were no scientific breakthroughs regarding a cure for Sanfilippo this year, our own breakthroughs are enough to sustain us. We supported Will through feeding challenges this year and were able to get his full eating back and his weight up to 119 pounds through lots of work and effective calorie supplements. We took Will on a birthday cruise, broadening his horizons and sharing his smile across three countries. We worked to find balance between our “rare” life and our “normal” life to make sure we met our daughter’s socialization needs as well as our son’s care needs.

A boy, his eyes nearly closed, stands in front of a Christmas tree. He's wearing an elf outfit that's mostly green with splashes of red, a black belt, yellow buttons, and a red and green hat.

Will, our favorite Christmas elf, is ready for a holiday theme day at school. (Courtesy of Valerie Tharp Byers)

Every day this year had its own challenges, but we met them. We spent time living, together as a family, and that’s all the success we need.

The holidays in the present

Even though we know our time together is limited, we try hard not to let it weigh us down. Instead, we try to use this knowledge to motivate ourselves this time of year.

We have Santa visits and Christmas light park trips, as well as cookie baking and matching outfits. There are even holiday-themed dress-up days at school, which Will faces with the typical humor of a 13-year-old boy, seemingly barely able to stop rolling his eyes at me once he sees his outfit.

We have fun together and count our blessings, taking no moment for granted. Every day, we work to continue to raise awareness and funds to help research in hopes that maybe, one day, those shadows we fear will be altered.

But for now, Will lives, and we live with him. That’s what fills my heart with hope during the holidays. It’s a hope bright enough to drive away the shadows.

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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