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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…
“Oh, no.” That’s never a good thing to hear in our house. I pick up my pace as I walk to the kitchen, where my husband, Tim, is feeding breakfast to our son, Will, who has Sanfilippo syndrome. “What’s wrong?” I ask, always fearful of the answer. “He’s doing…
For many, January is a month of renewal, a fresh start to a new year. It’s a time to make resolutions and promises to to be better in some aspect of your life. To us, it’s a reminder of, “Oh, crap, we have to take the Christmas decorations down!” My…
During this season of miracles, I invite you to celebrate one with our family. It happened the day before Thanksgiving, which usually is a day when no work or anything else of consequence gets done because of holiday preparations. My husband and I were figuring out our food-prep schedule and…
“He’s doing fantastic,” our geneticist gushes at our son Will’s yearly evaluation. “His mobility, his muscle tone … really, for 12 years old and his mutations, you couldn’t hope for better for his condition right now. I don’t think there are any other specialists he needs to see or…
October is my favorite month. I grew up in Ohio and loved the snap in the weather when fall finally arrived. Besides being my birthday month, it also brought Halloween. I always looked forward to spooky stories and the thrill of being “scared” at local haunted attractions or while watching…
When people learn what Sanfilippo syndrome is and that our 12-year-old son has it, their reactions are immediate. “Oh, I’m so sorry.” “I can’t even imagine.” “That must be so hard.” Sanfilippo is a devastating disease. There’s no way around that. It’s devastating to the child, feeling frustrated as…
“Get busy living or get busy dying.” As a teenager in the 1990s, I clearly remember that quote echoing off the television screen. It was from “The Shawshank Redemption,” one of the first R-rated movies I was allowed to watch. The film played around the clock on TNT,…
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