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…
Plot Twist – a Column by Valerie Tharp Byers
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.
“Do we get to go to the Halloween party next week, Momma?” my 10-year-old daughter asked the other day. “We do get to go!” I replied happily. “They gave me the date a long time ago and we were able to schedule it in. Dad and Will are probably going…
Standing in front of my mirror, I fluffed my freshly curled hair. “Well,” I murmured, “let’s see how this goes.” I grabbed my bag and keys while calling for my daughter. It was time to drive her to school and get myself to work. Somehow, against all odds, I’d found…
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…
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:…
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…
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.
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…
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…
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- The support system that allows my special needs child to thrive
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- I’m finally seeing a therapist, 3 years after my daughter’s diagnosis
- Tralesinidase alfa ERT for Sanfilippo type B children put on fast track
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- It’s hard to stay positive when Sanfilippo is so cruel
- Heart condition SSS found in Sanfilippo patient for first time