Luca Rising Foundation

10/13/2026

We are so thankful for thymus thighs and love seeing this research!

The thymus may not be a well-known organ, but it plays a big role in helping keep you healthy. Scientists once thought we didn’t need it as adults. But studies suggest that boosting its activity may help the body fight disease.

Read more about what NIH supported research is revealing about the thymus’s role throughout life in NIH News in Health:
newsinhealth.nih.gov/2026/10/professor-thymus

10/11/2026

Heroes Rising is more than a party. It’s a chance to change lives.

Join us October 23 for an evening of cocktails, hors d’oeuvres, special guests, inspiring stories, and the unveiling of a new children’s book for congenital athymia families!

We’re celebrating the heroes who made life-saving treatments possible while raising funds to provide families facing this ultra-rare disease with education, advocacy, meaningful support, and a community that understands their journey.

One night of celebration. A lasting impact on families who need us.

October 23 | 6–10 PM | Element Eatery

Every hero needs support to rise.

Tickets:

Heroes Rising marks a milestone for the Luca Rising Foundation as we gather for our very first benefit event. This special evening is a celebration of…

10/10/2026

Day 1785.

Most days, I look at Luca and wonder where my baby went. Somewhere along the way, the little boy who once needed help with nearly everything has become this incredible, determined, independent little person who seems to surprise me every single day.

The progress lately has been remarkable. He’s growing, learning, finding his voice, gaining confidence, and making leaps that once felt impossibly far away. When you see someone every day, though, it’s easy to lose sight of just how much has changed. The milestones start blending into ordinary life, and sometimes you forget just how extraordinary that ordinary life really is.

And then someone says something that stops you in your tracks. Today, it was someone who has been there for us, who knows where Luca started and understands just how much it has taken to get here.

“Little man has come extremely far and is kicking ass.”

Such a simple comment, but it meant the world to me. It made me want to go back through photos and look at the bigger picture. These were all taken around the same time of year, beginning before Luca was even born and continuing through today. Different years, different challenges, and an entirely different little boy in each one.

His progress has never been linear. There have been setbacks, detours, terrifying moments, and stretches where moving forward felt almost impossible. There were times when we were simply hoping to get through another day, never mind imagining what life might look like years down the road.

Sometimes progress is a major medical milestone. Sometimes it’s something as ordinary as watching your child do something you once wondered if he’d ever be able to do. And sometimes it takes someone else pointing it out to remind you of just how far you’ve come.

I think that’s what makes these moments so special. The people who have walked alongside us aren’t just seeing the little boy Luca is becoming. They remember the boy he was, too.
When they recognize his progress, it feels like they’re celebrating every version of him that fought to get here.

1785 days of becoming. 1785 days of proving that progress doesn’t have to be perfect to be extraordinary. He is, in fact, kicking ass. I couldn’t possibly be prouder of this kid.

10/08/2026

Derek Zoolander had Blue Steel. Luca apparently has Preschool Steel. My baby walked into school picture day and served a look that says, “I have a Bluey water bottle, a packed social calendar, and absolutely no time for your nonsense.”

Sir, you’re four. You still need someone to peel your string cheese. Why are you posing like you just signed an exclusive contract with Gucci. Somewhere, Derek Zoolander is questioning his entire career and Luca is silently laughing at him.

10/08/2026

Day 1783.

It’s Homecoming Week, which means themed days at school, and today was Superhero Day!
While his classmates dressed up as their favorite superheroes, Luca showed up as himself. Luca Rising. I don’t think I’ll ever find the words to explain just how much that means to us.

For a little boy who has spent so much of his life fighting battles most people will never understand, being his own superhero is something extraordinary. He doesn’t need a fictional character to look up to. He’s becoming someone he can be proud of all on his own.

Once upon a time, we were just hoping he’d get the chance to survive, let alone go to school. Now he’s walking through those doors as the very superhero his story inspired. How do I adequately express what that means to me? Realistically, I can’t. That being said, heroes don’t rise alone. Something incredibly special is coming, and I cannot wait to share it with all of you. Stay tuned tomorrow for a big announcement!

10/06/2026

Day 1781.

There is something incredibly powerful about sharing our story with future nurses. Today, I had the opportunity to talk with nursing students at Jersey College and Lutheran Health Network about congenital athymia, thymus transplantation, and what life actually looks like for a family living through an ultra rare diagnosis.

More than medicine, I wanted them to understand the human side of it. Today, they did. They heard the story and they met the patient. Luca was his charming self during our visit. He regaled all the future nurses with giggles, hugs, airplane noises, and some of the best hip shaking anyone has ever seen. He showed that life can exist beyond the diagnosis, the patients just have to be given a chance to thrive. Congenital athymia is more than words, more than a diagnosis, and more than the a rare disease. It’s a child. A future. A families hopes and dreams. It’s a life worth caring for, worth saving, and worth living. It’s a life that these nurses got to impact today.

Families may forget the name of a medication or the details of a procedure, but we remember the nurse who sat beside us when we were terrified. The one who listened. The one who advocated. The one who treated our child like a child and not a diagnosis. The ones who didn’t just help to save Luca, but saved me too. Some of those nurses will read this post. I hope they remember how important they have been to our journey.

If sharing Luca’s story helps even one future nurse walk into a patient’s room with a little more understanding, compassion, or curiosity, then telling it matters. These students will someday become the nurses standing beside another family on the hardest day of their lives. They will hold an incredibly impactful place in many lives, I am so thankful they get to hold our story with them too.