Today is our inspiration Riaan’s 6th birthday. Please join us in wishing him a very happy birthday by leaving a message on his Kudoboard. We read him all of his birthday messages, and he always loves them!
(December 12, 2025):
Dear Riaan:
When you woke up this morning, I said: “Happy Birthday, my baby.” You smiled. I breathed a sigh of relief. You’d made it to six. No moment, no year is promised to us. For anyone, I suppose, but certainly for us.
What a wild and wonderful year it’s been! What a wild and wonderful six years it’s been!
You’re a strong, charming, radiant, and beautiful boy, and it just gets better and better. Your dad and I continue to be so proud of you, and want to assure you that you’re the perfect child we’ve always wanted. You enrich our lives with a love and joy that we don’t quite feel worthy of, and we cling to it, like a moth to a flame. As your dad often says, you make us better people. You’ve certainly made us kinder, more patient, and more understanding of the suffering of others.
I don’t know if soulmates exist, Riaan, but if they do, you’re mine. Ever since you were one years-old, you’ve slept in my arms, every night, except for two. You are the world’s greatest cuddle buddy; I love how you always snuggle right into my armpit and put your head on my arm. And if I dare try to turn to face the other way or move my arm, you protest, even if it’s 3 am in the morning. Yet I’ve never minded. Holding you close, I always feel my blood pressure drop, my breathing slow, and the stress of the day evaporate. I feel seen and understood on the deepest plane. There are moments like this with you throughout the day but it’s the nighttime routine that’s always among my favorite and most memorable parts of the day. I hope it’s yours too.
This year has marked rapid progress on the development of our gene therapy for Cockayne syndrome. We finished both toxicology studies and GMP manufacturing. We engaged consultants and drafted our Investigational New Drug application. We’ve raised the amount needed to fund the work to date. We still need more to get to the finish line as costs and tasks continue to climb but hey, it’s been a productive year.
I’ve had more intense involvement in the work than I ever could have imagined. For months now, I’m often in meetings, phone calls, drafting emails, or writing/researching, on top of fundraising, social media, and running the organization, which means time away from you. Instead of playing with you, sometimes I’m writing an email. I feel guilty about this, but then we do resume playtime afterward. It’s the balance we strike because we need to get a treatment developed for this terrible disease. I do hope you understand.
I know, my dear, you have no idea any of this is happening and that’s ok. Your job isn’t to worry about drug development or your diagnosis, it’s to play, live life, love, and enjoy, and you seem to be doing that in spades. This year I’ve spent many nights thinking about consciousness and where the powers that be will take us. Is there continuity or is this it? Is our time truly finite or does infinity in some form exist? Can we merge together in eternity, or do we rise together - tumultuous and ecstatic - suspended in this wave, in this moment in time, and that’s what we get? I suppose, ultimately, it doesn’t matter as much as the love we share now.
We have this moment, and it’s perfect. Let the wave of our time together continue to rise. I’m not ready for it to sink back into the sea. Let the medicines we’ve worked together to develop buy us the time we so hungrily seek. Let the power of our love guide us through this next difficult and uncertain phase. Let us hope, and continue to dream. Let miracles wash over us.
And in the meantime, let us laugh together. As much as we possibly can. You are a perfect delight. I can’t believe how lucky I am to be your mom, and I know your dad feels exactly the same way.
We know the burden you carry isn’t easy. There’s so much you can’t articulate to us. There’s times we try to help but may not succeed. We’ll never stop though. While we are flawed and imperfect, we’ll always be by your side, your loyal fighters, and try to build you the oasis of healing and peace you deeply deserve. We will rise together, dear one, without fear, no matter what lies ahead.
Let us hold your hand, beautiful boy, and enjoy the riches and blessings we have, as a family.
Happy 6th Birthday, Riaan. Here’s to so many more.
Love,
Mama
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If you’d like to make a donation to Riaan Research Initiative in honor of Riaan’s 6th birthday, please click here. Thank you for your support!