Our Life with Sanfilippo: Ryder, Vera, Tessa, and me. Ryder—that’s my boy. He’s 12 years old now and was diagnosed with Sanfilippo Syndrome Type B when he was just 2.
Life hasn’t been the same since—but it didn’t fall apart. It just… reshaped. Again and again.
Every time Ryder got a new Sanfilippo “symptom,” our whole world would shift. We’d find a new normal. And then another. And another. He went from wild child to calm observer. From running everywhere to now being non-mobile. From eating more than a grown man to needing a feeding pump. His younger sister, Tessa—just 11 months behind him—passed him in milestones and became, in a lot of ways, his “big sister.”
We used to live in Washington, but we’re preparing for a big move to Ohio—hoping for a better neighborhood and more opportunities for my girls, Vera (12) and Tessa (11), to thrive.
In the beginning, I had hope to save Ryder’s life. I ran nonstop fundraisers with that goal. Now, I focus on supporting the life he has—making it comfortable, making it full of love.
Honestly? This life is never not stressful. I live in fight-or-flight every single day. I never know what Ryder’s next symptom will be or how I’ll help his sisters understand and cope. I know the prognosis. I know how it ends. I’ve watched other kids pass. And yet, I keep going.
We used to travel more—Ryder loved car rides. We’d go across states meeting doctors and connecting with other Sanfilippo families. Back then, he didn’t need as much. These days, travel means hauling his “luggage”—the equipment: feeding pump, oxygen, meds, diapers, a hoyer lift, O2 sensors, a hospital bed, the whole setup.
But I will push Ryder’s wheelchair wherever I need to go to support my girls. It’s not always easy, but they always know: Mom shows up.
My girls are warriors. They’ve seen more than most adults. We’ve had hard conversations about Ryder’s condition and what might happen. What scares them most? Not just losing their brother—but seeing their mom sad.
My family helps. My mom and stepdad were amazing in the early years, juggling Ryder’s therapy schedule and helping with appointments, especially during COVID. Things like telehealth and delivery services were game changers. My two sisters and their kids live close by too—they include us, support us.
I don’t have friends that visit anymore. But I do have one close friend in Oregon. We talk almost daily. And that’s enough.
I’ve been in the Sanfilippo community since 2016. I’ve seen the beauty, the connection, the kindness. But I’ve also seen the parts families don’t post online. I’ve learned to adapt, to advocate, to stay kind even when the world isn’t. I think this journey made me a stronger mom, not just for Ryder, but for all my kids.
And for any parent just receiving that Sanfilippo diagnosis, here’s my advice: Don’t give up. Take the pictures. Record the videos. Make the memories. Life doesn’t have a rewind button.
