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

Good news about our son’s weight — and our caregiver burnout

I gasp as I watch the numbers flicker on the screen of our digital scale. Is that 116? 118? It’s certainly not 122, there’s no way. The anxiety I’ve been trying to meaningfully work through the past few months threatens to escalate again. The screen finally freezes: 120.6 pounds. The…

Columns

When Sanfilippo gets in the way of making memories with family

As we sat in the Denver airport waiting to fly home, our 10-year-old daughter gave me a big hug. “This was the best vacation ever, Mom!” she exclaimed. “I had so much fun.” I smiled and hugged her back but then made eye contact with my husband over her head.

Columns

Hurricane Beryl reminds us of all we take for granted

“Sweetheart,” a voice says as a gentle prod to my side starts to wake me. I growl incoherently. It’s got to be too early to get up. “It’s starting,” I hear my husband say. “The bad news is that the power already went out. The good news is that I…

Columns

Milestones can bring unexpected tides of grief with Sanfilippo

June is a lot. I’ve written before about how the start of the summer impacts our family. Our son, Will, has a rare condition called Sanfilippo syndrome, and that diagnosis is thrown into full focus each June. As the school year ends, my caregiving responsibilities take…

Columns

Moving into a new home doesn’t change our priorities

“No, we are not moving. We can barely keep our heads above water with everything going on right now. How do you think we could add in a move?” I asked my husband incredulously. What was he thinking? This was nearly three months ago, in early March. Tim had recently…

Columns

A trip to the ER requires me to put fear aside and advocate for my son

“Mom. Mom!” I turn away from loading the dishwasher to find my daughter yelling for me and looking a little scared. “What’s up, sweetie?” “Daddy’s yelling for you. Will’s hurt. There’s a lot of blood.” My heart jumps as I tell her to finish getting ready for bed, and then…

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As our son with Sanfilippo ages, we continue to visit the Easter Bunny

“Who’s ready to see the Easter Bunny?” I coo to my less than impressed 13-year-old. I’m sorry, he’s 13 and three-quarters, as of this month. He looks at me impassively and stifles a yawn. I’d let him sleep until 8:30 a.m., and he still wasn’t thrilled with me for waking him…

Columns

How accessibility helps me make memories with my son

“Good morning, sweetheart. Ready to start the day with Momma? We’ve got a week of fun ahead of us!” I kept my voice light and happy as I woke up my son, Will, but my feelings were mixed. Will’s school district has added several extra weeklong breaks throughout the school…

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