Luca Rising Foundation

07/31/2026

Congenital athymia is a taker. It takes birthdays, holidays, firsts, and milestones, rewriting them around t-cell counts, infections, procedures, and isolation. It takes your village, replacing birthday parties and playdates with empty calendars and video calls. It leads to a loneliness that few people can truly understand. It takes childhoods from siblings. It takes time from an entire family. It even takes moments of joy, because happiness is often interrupted by the fear of what tomorrow might bring. At its worst, athymia takes lives.

Yet somehow, athymia can’t take everything. It cannot take hope. It cannot take resilience. It cannot take the community that rises from shared experience. Congenital athymia may take more than most people will ever understand, but it cannot take away the determination of families who refuse to stop climbing. It cannot take away the pride an athymia family feels celebrating another birthday. It cannot take away the love and gratitude for life that athymia families experience.

It is with great pleasure that we get to celebrate Gabe’s 7th birthday today. For seven years Gabe has defied the odds, he’s proven everyone who doubted him wrong, and he’s lived an incredible life despite the hardship. Happy birthday, Gabe! We love you!

07/26/2026

Day 1709.

Today is Genetic Testing Action Day, for families like ours, genetic testing changed everything. Long before congenital athymia defined our lives, there were clues. Clues are like hindsight though aren’t they, they’re only 20/20 once you know what you were looking for. Five years ago I had no idea what I was looking for. I had no idea that our world was going to be pulled out from under us, and no idea just how different our future was going to be from what I planned.

When I was 12 weeks pregnant, prenatal genetic testing revealed that Luca was at high risk for 22q11.2 deletion syndrome also known as DiGeorge syndrome. Getting those results when I expected to just find out his gender was overwhelming, heartbreaking, and so confusing. I tried to rationalize the situation, the actual chances that he would be born with it, the realization that I had no idea what the future looked like. I was so disappointed that he was high risk for a syndrome and then disappointed in myself for my shallow and selfish thoughts. I spent the rest of my tumultuous pregnancy trying to find peace. It didn’t come until he was born and I finally saw his face. Finally, I realized nothing mattered. He was perfect the way he was.

Five days after Luca was born we got his newborn screening results. He had failed the test because there were no t-cells. The whirlwind of entering medical isolation was traumatizing, we knew something was seriously wrong, but we still didn’t have all the answers. The diagnosis was between SCID and congenital athymia; two vastly different diagnoses and two vastly different treatments. It was on that was the day the ground shifted from under me and my free fall began. How ironic really, Luca was built to survive and to rise above and I was sinking hard with no ground to catch me. A couple of weeks later, FISH and microarray testing confirmed what the prenatal testing had suggested, Luca had 22q11.2 deletion syndrome. That diagnosis set our future in motion. It opened doors to the rare disease community, gave us direction, and ultimately led us up the mountain that would save his life through a thymus transplant.

For families affected by congenital athymia, genetic testing can be life-changing. Congenital athymia is most commonly associated with 22q11.2 deletion syndrome (DiGeorge syndrome), but it can also occur in children with CHARGE syndrome (CHD7 variants), FOXN1 deficiency, PAX1 deficiency, TBX1-related conditions, and other rare unidentified genetic disorders that affect thymus development. Identifying the underlying genetic cause helps physicians understand the whole picture, anticipate other medical needs, guide treatment decisions, and provide families with the knowledge they need to move forward and save lives.

Unfortunately, not every family receives answers as quickly as we did. Some families in our own community have spent months or even years searching for an accurate diagnosis. They endure countless tests, unanswered questions, and uncertainty while precious time slips away. In the rare disease community, we call this the diagnostic odyssey, and it’s one no family should have to navigate any longer than necessary. At the Luca Rising Foundation, we know that answers matter, every answer brings understanding. Every diagnosis opens a door and every test has the potential to change a child’s future, or in our cases save a child’s life. Every child deserves the chance to rise and genetic testing provides an early guide up the mountain.

Genetic testing doesn’t erase the fear that comes with a diagnosis, but it replaces uncertainty with knowledge. Once you know what you are facing you have a chance to find acceptance and form a plan. It gives families a starting point. It helps doctors make informed decisions. And for children like Luca and his bubble buddies, it can be the first step toward receiving the care that has the potential their lives. Today, on Genetic Testing Action Day, we’re grateful for the science, the researchers, the clinicians, and the advances in genetic medicine that helped continue Luca’s story. Sometimes, the smallest piece of missing DNA can provide the biggest piece of hope.

07/25/2026

Luca and his cars!!!

07/23/2026

Day 1706.

The last few days have been a little rough with Luca being sick. You know you’re struggling when it feels good to get out of the house and go to Children’s Hospital. Needless to say having a fun afternoon out today felt like a deep exhale.

Luca is finally feeling better, and we spent the afternoon at the pool with Alicia, Brad, Bella, and Novah. It was exactly what we all needed. Each time we see this family we always say we will see you again soon, and then life happens. It makes these afternoons that much more special though. The best part is that when you’re with a family that gets it like they do, it’s always like no time has passed. Just ask Luca, within literally seconds he had ditched me and was happily holding Alicia’s hand.

Luca was in his element today. He loved demanding we sit in every possible area in the pool, exploring every place to fly his plane, splashing without a care in the world, and enthusiastically devouring his current favorite food…plain buns. (If you’re wondering, yes. Just buns, his favorite is Martin’s Potato Rolls.) I even tried to offer him a bite of a funnel cake, he had no interest. Toddlers are so weird sometimes.

One of my favorite parts of the day was sitting down with Alicia and Brad. Somewhere in the conversation Brad casually mentioned that he’s known me for 20 years now. Twenty years. It’s incredible to realize how life has changed, how our stories have intertwined, and how friendships grow alongside us through seasons we never could have imagined. It’s especially funny to think back to how we met, he was the absolute best employee at Red Robin and I was definitely one of the worst. Instant friendship.

The moments that stayed with me and will definitely to live rent free in my head forever happened in the pool. It’s so simple, watching Luca and Bella absolutely thrive. Both of them had tracheostomies until they were toddlers. Both of them have fought battles most people will never see. And today? They weren’t “the trach kids.” They were just kids. Swimming. Laughing. Playing. Living their very best lives. When you look at them you see their big smiles, their radiant personalities, and their beautiful souls. When you look harder you might see the memories of their past scarred on their throats. Little indentions that gave them the ability to breathe and live with their trachs.

There was a time when Luca’s trach made something as simple as a swimming pool feel impossible. An open airway and water were terrifying. We lived in strict medical isolation, and I spent countless nights praying that someday we’d have ordinary afternoons like this. Not extraordinary, ordinary. Today, that prayer became reality, almost. In those early days I wished for a normal life, an ordinary life, a boring life would even be better than the reality we faced. Those are dreams I am thankful will never come true. We are destined for extraordinary days, an extraordinary life, and I couldn’t be more grateful.

To stand beside another mom who truly understands this journey, to watch our children doing the very things we once wondered if they’d ever get to experience… it was surreal in the most beautiful way. Today wasn’t just about swimming. It was about conversations we needed. It was about watching our children write new chapters. It was about experiencing the kind of normal parenthood that once felt completely out of reach. It was about living our extraordinary life with extraordinary people who we are fortunate to have in our corner.

Sometimes my cup feels like it’s so full because I am overwhelmed. I’m doing what I love, I’m living dreams I barely dared to dream, but I still struggle with reality more than I would like to admit. Usually saying ‘my cup runneth over’ is a sign of a full and happy life. I have that, truly. I also have a cup that’s full of emotions that I need to let out, experiences I need to let go, and memories that fill up space. It’s days like today that fill my cup with love and gratitude while helping me empty some of the stressors and emotional baggage this extraordinary life has brought me.

Days like today bring about a sense of clarity I don’t often see. Sometimes the miracles we’ve prayed for don’t announce themselves with fireworks. Sometimes they look like wet hair, tired smiles, resilient kids, strong parents, soggy towels… and a little boy happily eating a bun by the pool. This extraordinary life truly is a miracle.

07/21/2026

Four years ago, Luca received something far greater than a transplant. He received a second chance to live. A chance to build an immune system. A chance to leave isolation behind. A chance to experience the world we once had to watch from a distance.This year, we are...

07/21/2026

Day 1704.

The average young child catches 10-12 viruses a year and quickly their immune systems take action. The average Athymia child looks at a sick kid from a distance and bam, they almost instantly have a fever and a runny nose. Their immune systems even at best will never compare to a “normal” immune system. Despite that, Luca has been fortunate not to have any big viruses or illnesses recently, until now.

After a couple of rough days, including Luca missing his own thymus transplant anniversary party, we found ourselves back at Cincinnati Children’s for a sick visit. In typical Luca fashion he can’t just have one ailment, he has rhinovirus and a double ear infection. A double, double whammy! Clearly he believes in symmetry, commitment, and going big or going home. Ironically when Luca used to go big with viruses it meant we definitely weren’t going home. This is what realistic progress looks like.

Naturally, the complex care team that treats Luca appreciates that he likes to go all out when he gets sick. Before we went in for his appointment they requested he have a chest X-ray. While I love surprises, I didn’t need any plot twists coming up later this week so I was happy to get it done. Thankfully, the X-ray looked clear. No pneumonia. No bonus diagnosis hiding in the fine print. Just two angry ears, one obnoxious virus, and a child who somehow still had enough charisma left to charm the entire hospital.

Being at Children’s is never easy for me. That building holds entire versions of our life I do not enjoy revisiting. The hallways remember things I wish I could forget. The sounds, the halls, the harsh lights, all have a way of summoning old memories like emotional ghosts who apparently have no respect for personal boundaries. These walls remember the nights I cried until I couldn’t stand anymore, it feels like they’re covertly emotionally blackmailing me sometimes. The audacity of this hospital to remind me of my weakest moments.

Spending the afternoon at the hospital meant seeking the silver lining and the positive moments. Thankfully, they weren’t hard to find today. Five separate employees recognized Luca. Amidst the commotion of getting Luca shuffled to appointments we heard: “I’ve been following his story for years!”, “Oh my gosh, is this THE Luca?”, “Luca! You’re getting so big! I knew you in the NICU!”, and “I never thought I would get to meet you in person! I sent cards while I was on vacation for the Love for Luca project!”

Meanwhile, Luca who was feverish, tired, congested, ears raging, and feeling like absolute crap immediately transformed into his celebrity persona. He soaked up the attention. He was suddenly all smiles, he waved better than Mia Thermopolis, he loved hearing people excitedly call his name, and as soon as he realized that he was indeed THE Luca it was game over. He forgot he was sick, and he soaked up his fame.

I was already riding a high from getting our 501(c)(3) approval and celebrating his transplant anniversary this weekend yet, hearing people acknowledging our story only helped my mood rise higher. People who have prayed for him, mailed cards, shared posts, followed updates, cried with us, and celebrated from a distance were all here cheering us on when we needed them. Speaking with some of the people who have been quietly carrying pieces of our story all along. People who knew us, people who didn’t just look at the pictures they actually read the updates and appreciated the journey. That felt incredible.

I walked into the hospital worried about his breathing and left with a clear chest X-ray, antibiotics for two very dramatic ears, and the unexpected reminder that our family has been loved by more people than we may ever fully know. The hospital will always hold ghosts for me. Today though, it held familiar faces, joyful interactions, a clear X-ray, and one sick little boy relishing in his local celebrity status. We aren’t in the clear yet, but our hearts and heads are definitely rising above the clouds.

07/20/2026

Day 1703.

Sometimes, when I think back to the earliest days of Luca’s life, the memories unfold like scenes from a movie. At first, everything moves in slow motion. There is a newborn baby. A mother learning how to become his mum. A life quietly beginning despite some NICU hiccups. Then the antagonist enters the story. Congenital athymia rears its ugly head. In an instant, the plot twists. The music swells. Everything we thought we knew begins to unravel.

Watching it play back in my mind, I want to shout at the screen. I want to warn the people in those early scenes that a catastrophe is barreling toward them. I want to tell them to breathe because the years to come are going to be nonstop waterboarding, warn them to brace themselves for the moment their entire world changes. But then I remember there isn’t just one protagonist in this story, this is an ensemble cast and I am just one of them.

Before I became Luca’s mum, I had an idea of who I was and the mum I would be. Then congenital athymia arrived and took a wrecking ball to everything I knew. It took the version of motherhood I had imagined. It took relationships that could not withstand the weight of our reality. It took the career I had worked so hard to build. It took my independence, my confidence, my sense of direction, and eventually, my identity. It took nearly every piece of the life I knew while it tried to take Luca’s life too.

For a long time, I was no longer Jessica. I was the mom in isolation. The caregiver. The medication schedule. The medical binder. The person making impossible decisions and holding everything together while falling apart. I became Luca’s advocate because I had to. Then I became an advocate for other families because I could not bear the thought of anyone walking this road alone.

Somewhere along the way, beneath the hospitalizations, the isolation, the fear, the advocacy, the survival, and the constant responsibility, I lost sight of myself. I disappeared completely. Athymia has always been a taker, I let it take me. This week I realized I haven’t been watching this movie unfold, I have been rewriting the script and recasting the support characters. Life didn’t suddenly become easy or anything like I imagined when I was pregnant, but that no longer mattered. This week I opened my eyes and looked around at everything I have built, everything I have survived, and everything I have followed through on, and I finally allowed myself to see it for what it is.

I reached goals that once felt impossibly far away. I exceeded expectations I was almost afraid to admit I had. I honored commitments I made to myself years ago, back when they felt more like desperate promises whispered in survival mode than plans I could actually achieve. This week, I felt good as Luca’s mom. I felt good as an advocate. And after a very long time, I felt good as myself. That part caught me off guard.

I am beginning to feel like I am coming back into my own identity. Not the exact person I was before all of this, she is gone, but someone I am proud of. Someone stronger. Someone softer. Someone with scars, purpose, perspective and a fire I never knew I possessed. I have spent years trying to be a force for Luca. A force for families. A force for awareness. A force for change. This week, I realized I have also become a force for myself.

There is something deeply healing about looking in the mirror and recognizing the woman standing there. Not because she never broke, but because she rebuilt herself again and again with whatever pieces remained. Congenital athymia took so much from me. It took years. It took dreams. It took relationships. It took certainty. It took the life I thought I would have. But it did not get to keep me. This week, I took something back. My life. My identity. My confidence. My purpose. For the first time in a long time, I do not feel like a supporting character in my own story. I feel like the protagonist again.

This week, I did hard things. I allowed myself to be seen not only as Luca’s mum, not only as an advocate, and not only as the founder of a nonprofit. I was interviewed by a reporter as Jessica, who happened to be all of those things too. That may sound small to someone else, but to me, it felt enormous. For years, my identity has been tied so tightly to survival, caregiving, advocacy, and everything congenital athymia required of me. This week, I gave myself permission to share more of who I am beneath all of those roles.

I also made a video that told our story and introduced our mission. I spoke about what we have endured, what we have built, and where we are going. And once again, I heard my own voice acknowledging the identity I have fought so hard to reclaim. I did not disappear inside the story. I was part of it. I was not standing behind Luca, behind the diagnosis, or behind the mission. I was standing beside them; fully present, fully visible, and finally willing to take up space. It feels good to recognize myself again. It feels good to be proud of the woman I have become. It feels good to say that I am more than what happened to us, even though it shaped every part of me. This week, I did not only tell our story. I stepped back into my own.

07/19/2026

We are so excited that Gabe is going to be the first kiddo in the states to get a second thymus transplant! His second chance is getting a second chance! 🐦‍🔥

Gabriel is medically approved for a SECOND thymus transplant. Duke here we come again. 😅

We still need insurance to agree to the pricing agreement so we will have financial approval so it will still be a bit of a wait but this was a great step!

07/18/2026

Day 1702.

Today we celebrated two milestones that once felt impossible. Luca’s 4th thymus transplant anniversary and the official launch of the Luca Rising Foundation as a 501(c)(3) nonprofit.

Our journey has been filled with fear, resilience, hope, and extraordinary generosity. We are endlessly grateful for every person who helped us reach this mountaintop, and even more grateful that we now have the opportunity to turn around, reach back, and help the next family climb it. From ashes to advocacy, together we rise.

Thank you to Late Night Lap Media for helping to bring my vision to life, and Cars at Madison Square for the incredible celebration.

07/18/2026

Day 1701.

I’ve always believed the best days of our lives deserve to be celebrated beyond the day itself. From countdowns, week long celebrations, and half birthdays, I am always looking for a reason to celebrate. That’s why we’ve spent this entire week celebrating Luca’s 4th thymus transplant anniversary. Four years ago, we were given a gift we weren’t promised, a future. Moments like that deserve more than a single day.

Tomorrow, we wrap up an incredible week with our celebration at Cars at Madison Square. Over the past year, the car community has become such a special part of Luca’s life. They’ve welcomed him with open arms, celebrated every milestone alongside us, and reminded us that sometimes the most unexpected communities can impact you greatly. To say that Luca is excited is an understatement.

This week has been full of preparation for tomorrow. Projects, reminiscing, and planning to make this a day we will forever remember. Today we spent some time behind the scenes filming, and we can’t wait to share it with all of you. Looking back on this journey while preparing for tomorrow has been emotional in the very best way. I’ve relived the good days, the bad days, and all the days in between that brought us here. It’s a privilege to have made it this far with him, it’s a great honor to get to now share it with all of you tomorrow. We hope you’ll join us as we celebrate four years of life, hope, community, and the incredible journey that brought us here. ❤️