Plot Twist — Valerie Tharp Byers

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo syndrome seven years ago this month, it was crushing…

March 5, 2015, was the worst day of my life. I had stumbled upon a story from the “Today” show about a little girl with Sanfilippo syndrome, and my heart instantly knew what my brain wanted to deny:…

A few years ago, I was chatting with a friend who was the primary caregiver for a family member with a terminal condition. Even though our stories were different, we had enough in common with caring for a terminally…

It happened. It came on so gradually I didn’t even comprehend what was happening until it was there. But there is no denying it now: Will has a mustache. I can’t ignore it any longer that my baby boy…

I was sore. It was nothing major, just the usual muscle aches following a good workout when you’ve been off for a while. It was late August, and the kids had returned to school. Summer is hard enough…

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…

“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…

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…

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…