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

Holiday travel required conquering a fear of leaving my son at home

“So how are you doing with the thought of leaving Will for that long?” my well-meaning friend asked as we discussed holiday plans after a workout class last month. “A week is a long time.” I looked at her speechless for a moment. I’d just told her that my daughter’s…

Columns

Sanfilippo won’t overshadow our holiday this year

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…

Columns

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

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.

Columns

Taking a risk pays off during a cruise with our son, who has Sanfilippo

It’s another season of chaos in our house. I don’t know why I’m surprised. Chaos is our normal. Life with our son, Will, who has Sanfilippo syndrome, is rarely easy. Sometimes the challenges we face are expected, given his condition. But other times they are things we never…

Columns

Puberty and pizza rolls: Facing feeding challenges with Sanfilippo

About once a month, a group of friends and I share our latest favorite memes. It’s always a witty and humorous collection, so I take a few minutes to read through them when they’re sent around. This time, though, one of the them stopped me in my tracks. It read:…

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Marrying my husband was the best decision I ever made

Dear Husband, I love you. I appreciate you. You don’t have to go out of town the week before Father’s Day to prove how essential you are. With love (and sarcasm), Your wife You often hear about the bravery and courage of special needs moms, but there are a…

Columns

In the silence, I’d prefer more chaos

To many of you, it’s May. To those of you with school-aged children, it’s “Maycember” — that hectic time at the end of the school year. To me, it’s also less than a month until my baby boy, Will, turns 13. We are fully immersed in Maycember here.


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