Our Worlds Are Equally Important

by Jo Kaur, Founder, Riaan Research Initiative

(December 5, 2025) - Yesterday, I had a conversation with a scintillating speech therapist about wisdom and divinity, one of my all-time favorite topics. I said to him, “Riaan is as important as any other child because all children are equally important.” His eyes bulged, and he nearly sprang up from his seat. Locking eyes with me, he said, “We often hear how someone was a good person because they loved and took care of their family. But even serial killers have taken care of their families. Enlightenment is when you see the importance and value of all people.”

“Yes!” I said, nearly squealing, as I often do when I find a kindred spirit on this planet of ours. “All are equally divine.”

“Well,” he said. “We are hard-wired to protect our own to survive, but that’s a basic, primal instinct. To go beyond that, we must evolve, we must grow, that’s the illumination that I seek, that’s the wisdom that transforms the world.”

“Me too,” I whispered. “And I learned it from Riaan. He’s the embodiment of goodness, of selflessness. I yearn to be even a fraction of that.” My heart full, I walked away, and thought about our Thanksgiving.

To avoid the madness and germs of holiday travel, we took the kids for a quiet few days up into the mountains, for some R&R in the woods, complete with a hot tub. Thanksgiving was hearty and cozy. Due to work schedules, Richie and I took two cars. I took the kids up first and drove on a foggy, rainy, and super-trafficked Tuesday night. It didn’t help that the GPS took us on backcountry roads along the Hudson. Riaan was screaming and Jivan was complaining. It was not a fun ride. On the way back home, the kids decided they wanted to ride with Dad, and that was fine with me. Following them on the 2.5-hour drive back home, I couldn’t believe it. I was alone, in a car, with no kids, on a long drive. You see, for a stay-at-home mom, this is a rarity. I never get this kind of “freedom.”

I blasted adult music, I sped (shh, don’t tell), I felt guilty (only for a moment), but mostly I stayed behind Richie and the kids, sipping my coffee from this fancy shop in the tiny mountain town we had stayed at that always makes me feel so good. Watching his vehicle, I thought, “That car contains my whole universe. The people I love the most. I have to keep them safe.” I felt that I had to stay behind them to protect them. (How? Don’t ask for logic here. It made sense in the moment).

Then I turned my gaze to the other cars, and thought: “Well that’s a whole universe for someone else. A universe that matters just as much as mine. And they need to be kept safe too.” What a thought, what a moment of enlightenment. This is how Riaan lives, I pondered. This is how he is: the ultimate reflection of altruism and pure love.

Riaan has taught us that love shouldn’t stop at the edges of our own family. It should expand outward - to every family facing a rare disease or Cockayne syndrome diagnosis. That is why our work matters.

I share these tales to ask you to help us save as many universes, to help as many children diagnosed with Cockayne syndrome, as possible. We’ve launched our End of Year: The 12 Days of Riaan birthday countdown. Riaan turns 6 on December 12th, and we are looking to raise $60,000 by December 31st to facilitate CSA/ERCC8 gene therapy drug product release, shipping, and storage. This funding allows us to take the next step toward bringing this historic treatment closer to children.

And a very Merry Holidays to everyone!