Plot Twist — Valerie Tharp Byers

A banner for Valerie's column, depicting blue and purple swirls dancing across a night sky.

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

This Parent’s Fractured Life, Stitched Back Together

This was my Wednesday afternoon: I’m changing my son’s diaper while talking on the phone with one of his specialists to schedule his annual visit. I glance at the clock — his speech therapist will arrive in just 10 minutes and he still needs his snack. I finish the…

Columns

Some Kids Might Go to College in Diapers

“Don’t worry, they won’t go to college in diapers!” It’s the statement so many people give to parents as they go through the often difficult adventure of potty training. In the United States, potty training is normally started between 21 and 36 months, though only 40-60% of children…

Columns

Making Spaces: The Importance of Cultivating Inclusion

Summer — it’s a season of lots of fun, but also lots of difficulty for my family and many others like us. As I wrote last month, my 11-year-old son, Will, has Sanfilippo syndrome, which makes summer a particularly tough time for me as a caregiver. In addition to…

Columns

The Challenges of Being a Sanfilippo Parent in the Summertime

Y’all. I am tired. My son’s birthday was last week. Will turned 11. This was going to be a column about the bittersweet nature of birthdays when it comes to progressive, terminal diagnoses that have no treatment. About being so thankful for another year while also realizing that it brings…

Columns

The Things We Carry: Welcome to ‘Plot Twist’

Oh, the things my arms have held. I’ve carried my beloved stuffed animals and blankies, my school books and book bags, my moving boxes and furniture, and my babies. Emotionally, I’ve carried a sense of purpose, a sense of pride, a sense of responsibility. But the most significant thing I’ve…

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