Plot Twist — Valerie Tharp Byers

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Valerie Tharp Byers, EdD, is an education researcher living in Spring, Texas, with her husband, Tim, and children, Will and Samantha. Valerie became a rare disease advocate in 2015 following Will’s diagnosis of Sanfilippo syndrome, a degenerative and fatal genetic disorder. Valerie is also a board member of the Cure Sanfilippo Foundation, where she works to raise the public profile of Sanfilippo syndrome to support research and clinical trials. With “Plot Twist,” Valerie hopes that her reflections on working through life’s numerous hiccups will make readers feel less alone as they face their own challenges.

Columns

With Sanfilippo, it’s a foreign feeling when things go right

“Are you ready?” I asked my husband as we stood on the steps outside of a massive, intimidating building. “As ready as I can be, I guess,” he replied. We nodded at each other and walked to the front door. It was time to attend the first high school…

Valerie Byers

Columns

As a Sanfilippo parent, I’ve learned the value of trusting your gut

I have a bad habit of being right. If you ask my husband, he will jokingly confirm that he avoids getting into disagreements with me because I’m often proved correct (or because he just doesn’t want to waste energy arguing with me — a fair point as well!). The reason…

Columns

Leaning on advocacy and friends during a difficult time of the year

As February bleeds into March, which then bleeds into April, our family is caught up in a slew of emotionally taxing anniversaries. This month we … celebrated? Dealt with? Survived? Recognized? … that it has been eight years since we learned our son, Will, has Sanfilippo syndrome. It’s a…

Columns

My least favorite game as a Sanfilippo mom: Playing medical detective

“Oh, no.” That’s never a good thing to hear in our house. I pick up my pace as I walk to the kitchen, where my husband, Tim, is feeding breakfast to our son, Will, who has Sanfilippo syndrome. “What’s wrong?” I ask, always fearful of the answer. “He’s doing…

Columns

How We Maintain Joy for Our Boy — With a Little Help From Pat

For many, January is a month of renewal, a fresh start to a new year. It’s a time to make resolutions and promises to to be better in some aspect of your life. To us, it’s a reminder of, “Oh, crap, we have to take the Christmas decorations down!” My…

Columns

When Advocacy and Hard Work Result in a Thanksgiving Miracle

During this season of miracles, I invite you to celebrate one with our family. It happened the day before Thanksgiving, which usually is a day when no work or anything else of consequence gets done because of holiday preparations. My husband and I were figuring out our food-prep schedule and…

Columns

With Sanfilippo Syndrome, Small Victories Mean More Big Decisions

“He’s doing fantastic,” our geneticist gushes at our son Will’s yearly evaluation. “His mobility, his muscle tone … really, for 12 years old and his mutations, you couldn’t hope for better for his condition right now. I don’t think there are any other specialists he needs to see or…

Columns

Among My Greatest Fears Is When Sanfilippo Children Lose a Parent

October is my favorite month. I grew up in Ohio and loved the snap in the weather when fall finally arrived. Besides being my birthday month, it also brought Halloween. I always looked forward to spooky stories and the thrill of being “scared” at local haunted attractions or while watching…

Columns

The Hard Part Is Not What We Thought It’d Be

When people learn what Sanfilippo syndrome is and that our 12-year-old son has it, their reactions are immediate. “Oh, I’m so sorry.” “I can’t even imagine.” “That must be so hard.” Sanfilippo is a devastating disease. There’s no way around that. It’s devastating to the child, feeling frustrated as…

Columns

It’s Worth It to Take the Time and Get Busy Living

“Get busy living or get busy dying.” As a teenager in the 1990s, I clearly remember that quote echoing off the television screen. It was from “The Shawshank Redemption,” one of the first R-rated movies I was allowed to watch. The film played around the clock on TNT,…


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