The Myth of the Support System

by Jo Kaur, Founder of Riaan Research Initiative

(November 10, 2025) - It’s been a very intense few months. We have been knee-deep trying to wrap up our gene therapy program to present a neat package to the FDA: lengthy meetings, troubleshooting, email exchanges, plan changes, document drafting, and the endless but honorable grind of pushing, organizing, and advocating as much as possible to move our therapeutic program closer to the treatment phase.

There’s much to be done, more money to raise, and minor studies to complete, but we have made significant progress toward our Investigational New Drug application with the FDA. Riaan continues to be our North Star, driving the team forward. A full, highly skilled, and dedicated group stands behind this effort: consultants, clinicians, scientists, program managers, and Riaan Research Initiative, all united in our commitment to children diagnosed with Cockayne syndrome. None of this would be possible without our incredible donors, and we will never tire of thanking you (thank you!).

Though Cockayne syndrome continues to leave its devastating mark on his body and brain, his energy, curiosity, and zest for life remain boundless: he enthusiastically walks from the street to our door with minimal core support and excellent weight-bearing, he loves interactive games like balloon volleyball and hour-long video chats with Nani Ji, and rides on his tricycle, balancing himself for long periods. He continues to show strong communicative intent and language skills, and most importantly, awareness: for instance, he signs for his pacifier when he’s tired, says a few word approximations for daily routine items, rolls his eyes at his brother’s antics, babbles and “talks” all day, and laughs right along with us. He is fully present, he is here and sharp, and possesses an infinite treasure trove of light and love.

Riaan reminds us that while imaging and other clinical tests can reveal the hardware of this vicious disease, it cannot capture the soul, essence, resilience, and spirit of our children, which remain nothing short of Olympian. And to that end, we are committed to clearing every obstacle in our path to get him, and other children, treated.

With Riaan and the work always on my mind, this weekend felt like the first breath I’ve taken in quite some time from the grueling pace of recent months. While exhaling, I took a longer scroll through social media, and that’s when I caught my breath again. Suddenly, I could no longer breathe.

The story was that of a beautiful single mom, originally from the country of Suriname, and her extraordinary 15 year-old daughter. The mom, in her early 40s, was an extremely successful breast cancer surgeon here in New York. Her daughter was a high achieving student. On Instagram, they clutched each other, laughing, and posting: “There isn’t a world where we exist without each other.”

Then something terrible happened and everything changed.

I don’t know this family at all. I don’t know the full story. Here’s what has been reported. The daughter was diagnosed with an aggressive form of leukemia. A week after her diagnosis, just a mere week, she passed away from acute liver failure. A few weeks later, her mother died. None of the news reports or public statements tell us the mother’s cause of death and instead invite us to read between the lines.

There was a link to the mom’s Facebook page on the articles. Of course I clicked on it, and read every publicly available post she ever wrote. The mom, who I find to be fascinating and brilliant, described her endless love for her daughter, celebrating her as she grew older. She had a fondness for quoting the work of Paulo Coelho and Maya Angelou, and it was evident she carried a giant heart and resolve, managing to put herself through a grueling five-year surgical residency despite being a single parent. Her work paid off: she became one of the most competent, compassionate, and beloved cancer surgeons in New York, helping to heal so many others. And now she and her daughter are both dead in utterly tragic circumstances, within weeks of one another.

I devoured every bit of this story, crying as I read, because I am heartbroken for this family and for all who love them, and can relate to it. Certainly any parent who has a fatally ill child, or has lost a child can relate to it. But the elements of this story that really stood out to me: the intense love and bond between mother and child; the unyielding strength of the mom, a gifted surgeon, and what she had achieved as a single parent; and yet nothing she had built could support her during her time of ultimate grief, during a pain so wretched it is usually discussed only in whispers.

Her story forced me to confront an uncomfortable truth: even the strongest and most successful among us can collapse under the weight of grief, especially when community and society offer so little room to fall apart, and hardly a finger to help us get back up on our feet.

Who will save us from our grief? It’s a question we should ask more openly. Mothers in particular are often coerced into supernatural resilience, expected to overcome, and yet not all of us do despite how much career success we may have achieved, or how strong we appear to others. The physical toll of the ultimate grief is also substantial: it is possible to die with a broken heart (and to reiterate, I do not know the cause of death here, only that it was sudden).

From what I have observed, very few grieving people have adequate support systems. Our societies aren’t set up to cater to our needs. And a few likes on a social media post where we express our grief or talk about our children aren’t the kind of support I’m talking about.

For many, it may also require divinity and the wisdom of community, to empower and shield us as we transform: after all, none of us will ever return to who we once were. Yet we live in a fast-paced, keep-going, move-on kind of world that rarely allows this pursuit.

We have to do more for grieving parents, both in the anticipatory grief stage, and after. I’ve written extensively on grief, my views on death, faith, and the afterlife, and how we approach these topics in the rare disease community. Perhaps one day I’ll find the courage to share. I believe intellectual and philosophical reflection are important forms of self-care, and it is certainly better to openly discuss and deliberate these issues than to keep them in.

Too many of us suffer silently. The consequences, of course, can be deadly.

The myth of the support system isn’t that it doesn’t exist, it’s that we believe strength means not needing one. We all need a little help to grieve and heal, and this is certainly the case while navigating what experts describe as one of the most consequential and devastating losses a person can ever experience - child loss.

It is my sincerest hope that we come together to create the support system we all need, on and offline, for all grieving people, including those experiencing anticipatory grief.

Meanwhile, we happily and eagerly continue the work to build treatments for Cockayne syndrome. Stay tuned for exciting updates in the coming months!

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