10/09/2026
Day 1784.
When you have a baby born with a terminal illness every date matters a bit more. Every moment impacts you deeper. Every day is a gift. One of those days unfolded like any other for me when I was pregnant. I had no appreciation for the significance, October 8, 2021. A day that changed everything.
Five years ago today, the FDA approved RETHYMIC, the first and only FDA-approved treatment for immune reconstitution in children born with congenital athymia. Just over a month before Luca was born our fate was unfolding.
I remember hearing about the approval when it happened. At the time, we knew there was a 20% chance Luca would be born with 22q11.2 deletion syndrome, also known as DiGeorge syndrome. We had prepared ourselves for the possibility of that diagnosis and some of the challenges that could come with it, I expected complications but I never could have expected congenital athymia. To be honest, I had never even heard of it.
I had absolutely no idea that a medical announcement I was hearing about in passing months before my baby was due would become the reason my son had a chance to live. Sometimes the most important and dramatic moments come without fanfare, without real acknowledgment, and without the deserved attention. While I was preparing to welcome my baby into the world, decades of scientific research, medical innovation, heartbreaking losses, and extraordinary determination were finally coming together to make his survival possible. I had no idea.
The story of RETHYMIC didn’t begin in 2021 with FDA approval. It began decades earlier, with people who refused to accept that children born without a thymus had no future. Dr. Louise Markert and her team at Duke University spent more than 25 years pioneering thymus tissue implantation, beginning clinical research in the 1990s. They were trying to solve a problem that had historically been devastating for families. Children born without a functioning thymus could not develop the T cells necessary to protect themselves from infections. Without an effective treatment, most would not survive early childhood, they were lucky to live past a year.
Imagine being told that your child has a condition so rare that most physicians have never encountered it, and that there is no approved treatment to save them. Now imagine being the physician who decides that answer isn’t good enough. That is the kind of determination that built RETHYMIC.
The first children began receiving experimental thymus tissue implants at Duke University Hospital in 1993. Over the following decades, Dr. Markert and her colleagues worked to understand how transplanted thymus tissue could help children develop their own functioning immune systems. There were clinical trials. There were complications. There were children who survived and children who heartbreakingly did not. There were parents who took enormous leaps of faith, consenting to experimental treatment because the alternative was almost unimaginable.
Every one of those families contributed to what we know today. Progress wasn’t a straight line, it was ups and downs that were shaping a future I never could have prepared for. In 2019, after more than two decades of research, the initial application for FDA approval did not succeed. The FDA required additional work before the therapy could be approved. After years of effort, there was another obstacle between this treatment and the children who desperately needed it.
Thankfully, the initial failure was not the end, it was a steppingstone. The teams behind RETHYMIC kept going. The application was resubmitted in April 2021. On October 8, 2021, the FDA finally said yes. One week before my life would turn upside down and I would be admitted to the hospital for six weeks for a complex pregnancy, everything was changing. Worlds were preparing to collide in the most dramatic way.
Twenty-eight years after the first clinical transplants, a treatment that had once been experimental became an FDA-approved therapy. One month later, Luca was born. I cannot adequately explain what it feels like to look at that timeline now. To understand that while I was pregnant, completely unaware of the battle we were about to face, other people were fighting to make sure children like mine could have a future. Scientists I had never met. Physicians whose names I didn’t know. Families who had already endured what I couldn’t yet imagine. Children whose lives became part of the research that would eventually help save my son’s.
They were all part of Luca’s story before I even knew there was a story to tell. On July 12, 2022, Luca became the 103rd child to receive a thymus tissue transplant at Duke University and the third recipient following FDA approval. What a whirlwind of a life it has been. Today, I get to watch him go to school. I get to hear him laugh, watch him make friends, and see his personality grow bigger than life itself. I get to experience the beautifully ordinary moments of childhood that once seemed impossibly far away. Those moments exist because people refused to give up. I will never forget that.
Today is about heroes. Not necessarily the ones wearing capes. Although, if you know Luca, you know he has a pretty spectacular one featuring his footprint phoenix. His symbol of strength, resilience, and courage. It doesn’t take a cape to make a hero. Sometimes it takes a phone call, a sense of purpose, and an unwavering dedication. These heroes are the physicians who devoted their careers to children the world barely knew existed. The researchers who spent decades searching for answers. The donors and medical teams who made transplantation possible. The parents who trusted the process when there were no guarantees. The children who came before Luca, whose courage and experiences helped create a path for those who would follow.
These are the children who continue to fight battles most people will never fully understand. Heroes like Luca, and like our bubble buddy friends. The take away here though, is that a medical breakthrough doesn’t mean the work is finished. It means an entirely new chapter becomes possible. FDA approval gave children with congenital athymia a chance at life. Now we have to make sure those children and their families have the resources, support, education, advocacy, and community they need to actually live it.
Surviving is only the beginning. Families still face years of medical uncertainty, isolation, financial strain, complicated care, and emotional challenges that don’t simply disappear after transplantation. That is why I founded the Luca Rising Foundation. That is exactly why we are hosting Heroes Rising, our inaugural fundraiser, on October 23. This isn’t just another fundraising event. It is a celebration of the people who got us here and a commitment to the families who are still finding their way.
We are bringing together physicians, researchers, advocates, families, community supporters, and some very special guests for an evening centered around something incredibly powerful: what becomes possible when people decide that rare doesn’t mean forgotten.
We’ll celebrate the extraordinary children at the heart of this mission and recognize the heroes who helped make their futures possible.
We’ll also be unveiling something deeply personal to me: a new children’s book I wrote specifically for congenital athymia families. A story created so these children can see themselves represented, so their siblings can better understand their journeys, and so families navigating this incredibly rare diagnosis can feel a little less alone.
There will be special guests, meaningful fundraising, celebration, connection, and opportunities to create a lasting positive impact. There will be plenty of joy, too. Because after everything these families have endured, we deserve some of that. I want this room filled with people who believe that medical progress deserves to be celebrated, but also that progress creates a responsibility to keep moving forward.
I want the physicians, nurses, therapists, and staff who spent decades making this possible to see the children who are living because of their work. I want families who have spent so much time feeling isolated to walk into a room and realize they have an entire community standing behind them. Lastly, want people who have never heard of congenital athymia to leave understanding that they have the power to change what the future looks like for these children.
Five years ago today, the FDA approved a treatment that would save my son’s life. I didn’t understand the significance of that day when it happened. I certainly do now. If there is one thing these five years have taught me, it’s that heroes don’t always arrive in the moment you need them. Sometimes they spend decades preparing for a moment they don’t even know is coming.
It’s because of the heroes who came before him, Luca gets to be a hero in his own story.
Because of them, we get something that once seemed impossible. We get more birthdays. More first days of school. More laughter. More ordinary Thursdays. More time. We get to watch life continue. Now it’s our turn to help make that possible for the next family.
No hero climbs alone. Together, we rise.
HEROES RISING | FIRST ANNUAL FUNDRAISER
October 23, 2026 | 6:00 to 10:00 PM
Element Eatery | Cincinnati, Ohio
Join us for cocktails, hors d’oeuvres, special guests, an exciting book unveiling, and an evening of meaningful impact.
Tickets and event details:
https://www.zeffy.com/en-US/ticketing/heroes-rising
www.lucarisingfoundation.org
