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I recently attended the ADVANCE 2023 virtual conference about Sanfilippo syndrome, which provided a wealth of information about the disease: reports from researchers regarding experiments and findings, news of potential clinical trials and therapeutic advancements, and tips from parents on raising children who have it. As a parent…

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:…

While chatting with a friend recently, I found myself talking about my sister, Abby, and my fears regarding her future. Abby has Sanfilippo syndrome, often referred to as a childhood Alzheimer’s. At 27 years old, she’s lost most of her basic life skills, and she’ll eventually lose her…

Our family recently gained a second caregiver for my daughter, Abby. Now we have two women who care for Abby and help provide respite for my husband and me. For families who have disabled children, caregivers are exceptionally important. They’re vital in allowing families to rest and recuperate. Abby…

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…

Recently, my parents created a TikTok account dedicated to my sister, Abby, who has Sanfilippo syndrome. One video they shared had pictures of Abby and me at different ages. As I scrolled through the comments, I saw one noting that I had gone from being Abby’s little sister…

Raising a disabled child is difficult. They require more help to be successful in the world. They may need something as simple as extra time to complete tasks or something much more involved, such as wheelchairs or other mobility equipment. When disabled children reach adulthood, caring for them can become…

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 a Sanfilippo sibling, I grew up with my sister, Abby, who is two and a half years older than me. We lived in the same house for about 20 years, so we made lots of memories together. I often view my life in parts, as if it were…

Raising a child inherently involves worry, and many parents stress most about their children’s well-being and safety. Some parents have more reasons to worry than others. I, for instance, have an adult daughter, Abby, with Sanfilippo syndrome. Since it’s rare and terminal, I feel extra worry. I’ve written…

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…

In 2017, my daughter Abby was diagnosed with Sanfilippo syndrome, a rare, terminal disease. It’s sometimes referred to as “childhood Alzheimer’s” because the symptoms are similar. As a small child, Abby used to be able to speak, interact with others, and independently perform many tasks. This disease is…

“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…

Rare Disease Day on Feb. 28 is an excellent opportunity to promote awareness of diseases that often receive less attention, research, and funding than more commonly known ones. My daughter Abby has a rare disease called Sanfilippo syndrome, which sometimes is called “childhood Alzheimer’s” because the symptoms…

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…

My husband and I just returned from a wonderful Christmas vacation away from home. We enjoyed time with friends, relaxed, and took advantage of the opportunity to do what we wanted for several days. We were only able to do this because we had caregivers at home for our daughter…

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…

Caring for a loved one with a terminal illness is difficult. Not knowing the details or the timing of their passing causes so much anxiety and fear. My daughter Abby has Sanfilippo syndrome, a rare, terminal disease. I find myself caring for her while she is here but also…