Luca Rising Foundation

Day 1765.

Many years ago I learned about the observer effect, it came up in conversation again today. The basic idea is that sometimes you cannot observe something without changing it. The act of measuring becomes part of what is happening. The observer is no longer completely separate from the outcome.

It’s so simple really, it makes sense. Yet, I haven’t been able to stop thinking about it since this afternoon. So much of Luca’s life has been observed. Before I knew the color of his eyes, I knew the numbers on his monitors and how they impacted him. I knew the reactions he had from medications, from treatments, and how he responded to certain sounds and situations. I observed everything.

Congenital athymia made paying attention an act of survival. The smallest change could matter, and I became fluent in things no mother ever wants to learn. Oxygen levels. Respiratory rates. Lab values. T cell counts. The difference between sleeping peacefully and working too hard to breathe. For years, I studied my own child. Not because I wanted to, but because loving him required it. Somewhere in those years, I changed too. That is the part of the observer effect I keep coming back to.

You cannot spend years watching someone you love fight for his life without the watching changing you. Eventually, the machines disappear, but something inside you keeps scanning. You hear the cough from another room. Your hand finds a forehead without thinking. You notice the slight change in energy that nobody else would catch. Your body remembers a danger that isn’t always there anymore. Survival mode doesn’t leave you just because you survived. There is another side of this that is harder for me to admit.

I wonder if being watched changes the child, too. What happens when so much of your childhood is measured? How much did you eat? Does that hurt? Are you tired? Hold still. One more blood draw. One more appointment. One more number carrying far more weight than a number ever should. There was a time when all of it was necessary to keep Luca alive. Now he is four, he is free, and he is thriving.

He is loud, funny, and stubborn. He loves cars, planes and his friends. He runs away from me now. He tries things without letting his timid nature hold him back. He is discovering a world I spent years protecting him from. I am realizing there is a difference between monitoring a life and witnessing one.

One is looking for evidence that something is wrong. The other is being completely present for everything that is right. It is watching him laugh so hard he can’t catch his breath without immediately thinking about his breathing. It is letting him climb a little higher before I say, “Be careful.” It is allowing a cough to just be a cough. It is letting a beautiful day remain beautiful without searching the edges of it for whatever might come next.

Maybe the observer effect goes both ways. The life you watch changes you. I think there is another layer to it. Sometimes you witness something so closely that eventually you cannot separate what you have seen from who you have become.

That is Luca Rising for me. It’s what started as a mom sharing life through a blog. I didn’t sit down one day and decide I wanted to start a nonprofit. I became Luca’s mom. Then I observed. I watched my newborn become a patient before I had really gotten the chance to know him as my baby. I watched hospital rooms become our home. I watched him survive things I could barely stand beside him and witness. I watched the rest of the world keep moving while ours became incredibly small.

I learned congenital athymia because I had no choice. I learned isolation because we lived it. I learned how lonely a rare diagnosis can be because I felt that loneliness myself.
When Luca finally began stepping into the world we had spent years keeping him away from, I realized I couldn’t simply walk away from the world we had come from. I couldn’t unknow what I knew. I couldn’t forget what it felt like to desperately need someone who understood.

I couldn’t stop thinking about the mother sitting beside another hospital crib somewhere, staring at numbers and trying to understand how this could possibly be her life now. Luca survived, but the experience did not leave me where it found me. It changed what I notice. It changed what matters to me. It changed what I am willing to fight for. Eventually, all of that watching became a responsibility I couldn’t ignore. That responsibility became Luca Rising Foundation. Maybe that is the observer effect I understand best.

I spent years observing Luca’s fight for a life beyond congenital athymia. Somewhere along the way, his life changed mine so completely that I decided to spend mine changing what comes next for the families behind us. I don’t think there will ever be a version of me that doesn’t notice everything about Luca. Too much has happened. I know too much. I love him too much.

Thankfully, I am learning the difference between watching because I am afraid to lose him and watching because I cannot believe I get to see him live. For years, I watched to make sure my son survived. Now I get to watch him become himself. The Luca Rising Foundation exists because I want the next mother watching her child from beside a hospital bed to know that someone sees her, too.

📸: Late Night Lap Media

Day 1764.

On Monday I felt like the week was never going to end. Luca had SCIG to start the week and things as per usual did not go to plan. Thankfully, the beginning doesn’t have to dictate the end. As the week progressed he saw himself as a super hero thanks to The Live Like Maya Foundation, adjusted to a new therapy schedule like the tiny professional patient he never asked to be. We spent time with some of our favorite people, made tons of happy memories, and went to his very first Cincinnati Reds game with A Kid Again - Southwest Ohio Chapter.

We even “upgraded” our seats to see Debby and Tim, which made Luca very, very happy. There’s something really satisfying about going from the nosebleeds to row 8 behind the dugout. Quinn even caught a fly ball at the game, because apparently our group was determined to make the night as memorable as possible. It was special to say the least.

Perhaps the greatest achievement of the week though was that I successfully consumed multiple iced coffees without dumping a single one on my child. No Luca’s were impacted by my never ending need for caffeine. Growth. Sometimes it’s on the charts, sometimes it’s seen in quick moments, and sometimes it’s measured in the ounces consumed vs dumped.

Underneath all the chaos and laughter, this week meant a lot to me. A Kid Again has given our family something that is really difficult to explain unless you have lived through years where childhood had to come second to survival.

For so long, Luca’s life was hospitals, isolation, procedures, therapies, medications and waiting. There were entire seasons of childhood that we simply did not get to experience the way other families did. So getting to walk into a Reds game with him, watch his face light up, see how happy he was, laugh with our friends and just be a family doing something completely ordinary feels anything but ordinary to me.

These are the memories I used to wonder if we would ever get to make. Now we are making so many of them I can barely keep up. There will still be SCIG nights. (I will still have a mental breakdown each time most likely too.) Therapy schedules. Appointments. All the pieces of this life that do not disappear just because things are better.

But there are also baseball games.

Friends.

Late nights.

Big laughs.

Fly balls.

Cars.

So much love.

A little boy getting to be exactly what he should have always been allowed to be.

A kid.

And a mom who, for one entire week, managed to keep her iced coffee in the cup. We are both thriving. ❤️

Day 1761.

I hate SCIG nights. I hate getting everything out. I hate seeing Luca notice the supplies and immediately know what is coming. The anxiety starts before we even begin. The negotiating. The crying. The begging. The way his entire body tenses when I get close to him. But mostly, I hate that I am the one doing it to him.

I am his mum. I am supposed to be the person he runs to when something hurts. Instead, I am sitting there with needles in my hands while he is crying for me to stop, and I know why I cannot. That is the part that destroys me. I have to hurt my child to help protect him. I have to do something that scares him and hurts him because I understand something he is still too little to understand. His body needs this.

SCIG is immunoglobulin made from donated human plasma. Those antibodies give him protection his immune system has needed help providing. For patients with congenital athymia and ongoing immune dysfunction, immunoglobulin therapy can be an incredibly important part of protecting them from infections their bodies may not be equipped to handle normally. I understand the science. I understand the necessity. I know how incredibly fortunate we are to have access to it. Yet sometimes I still want to throw the pump and syringes across the room.

Knowing why we are doing it does not make it easier when he is sobbing and begging me to stop. It does not make it easier to hold him still or to see the way he looks at me like he cannot understand why his mum is doing this to him. There is no explanation I can give a four year old that makes any of this feel fair.

People hear “home infusion” and I don’t think they understand what home can actually look like. It looks like medical supplies covering the table and a kid who has already endured more medically than most adults ever will completely losing it because he just does not want one more needle. It looks like a mother trying desperately to keep her voice calm while every nerve in her body is screaming. It looks like holding your own child down while simultaneously telling him that he is safe with you.

Do you know what that does to a mother? Because I do. I have to live with this heartbreak daily.

I know what infection can mean for Luca. I remember isolation. I remember the hospital. I remember being terrified that something as ordinary as a cold could become something catastrophic. I remember all of it, which is why I will keep doing this. I will put the needles in. I will absorb the screaming. I will let him be angry with me. I will tell him I am sorry and kiss his head while he cries. I will keep myself together until he does not need me to anymore, and then I will go somewhere by myself and completely lose it.

This is what saving your child sometimes looks like. It isn’t inspirational. It isn’t brave. It isn’t a beautiful little medical warrior moment. Sometimes it is ugly. Sometimes everybody is crying. Sometimes I am angry and overwhelmed and so tired of asking my child to endure things simply because he was born into a body that requires them.

Then I look at the syringes of immunoglobulin and remember what is actually inside it. Human plasma. Something that exists because complete strangers sat down and gave a piece of themselves without knowing where it would go. They don’t know Luca. They don’t know what SCIG night looks like in our house. They don’t know that their donation can become antibodies flowing into the body of a little boy who needs them.

But I know. And I will never stop being grateful for them. Gratitude does not cancel out exhaustion. It does not erase how hard this is. I can be unbelievably thankful this therapy exists and still hate what it takes to give it to him. Both things are true.

Tonight, I am his mum. I am struggling to be his safe place, but I still am. I am also the person holding the needle. I don’t know if I will ever be okay with that, but I will do it because he needs me to. When it’s over, I will clean everything up, hold my baby, and somehow find a way to do it all again next time.

Day 1760.

When Luca was selected by The Live Like Maya Foundation to participate in a photoshoot with So Many Angels, I was asked who he wanted to be. The purpose of these photoshoots is to give children living with complex medical diagnoses the chance to dress as the character who gives them courage. Someone who makes them feel strong. Someone who reminds them to be brave.

I was quick to introduce him to some of the superheroes he wasn’t familiar with, and rewatch the movies of the ones he already knew. Nothing was really piquing his interest. Luca didn’t want to be anyone else. He wanted to be Luca Rising. I would ask him repeatedly which superhero he wanted, he’d ponder it while tapping a finger on his lips and eventually say…Luca. The third time he committed to the answer, I committed to the costume.

This little boy has spent his entire life learning what it means to be brave. Long before he knew what courage was, life required it from him. Being born with congenital athymia meant there were hospital rooms and months on a ventilator. A trach. A feeding tube. Procedures, medications, monitors and alarms. There were years of isolation when the world outside of our home simply wasn’t safe for him. There was a time when I had no idea what Luca’s life would look like. I just wanted him to have one.

He made it to transplant. His immune system grew. The machines slowly disappeared. Isolation ended. The trach came out. The little boy who had spent years being protected from the world finally got to become part of it. That is Luca Rising. He has been rising since the start.

It has never meant that the hard parts disappeared or that I left them behind. They are part of him. They always will be. Thankfully, they don’t define what he is capable of. Luca was born into a world that wasn’t made for him. His body couldn’t safely exist in the same spaces as everyone else. He couldn’t go to birthday parties or playgrounds. He couldn’t walk through a grocery store. He couldn’t experience so many of the completely ordinary things I rarely think twice about.

For a long time, childhood happened around him. Now he is right in the middle of it. Running. Playing. Going to school. Making friends. Loving cars. Being loud. Being stubborn. Making me laugh. Taking up every bit of space he was always meant to have.

Despite the odds, this little boy who once needed the world to stay away from him has become a beacon of hope for other families trying to find their way through congenital athymia. He shows them what can come next. Standing there watching him during this photoshoot, I wasn’t thinking about any of that.

I was just his mom. I was watching my hero. My son. I have spent years watching Luca do things I didn’t know a human being could do, much less a child. I have watched him hurt and get back up. I have watched him lose pieces of childhood and then throw himself completely into the life he finally gets to live.

I have been proud of Luca thousands of times. This time was different. Because this time, I wasn’t the one telling him he was brave. He knew it. I got to stand there and watch my son proudly become himself. There is something almost indescribable about that as his mother. Knowing me though, I’m certainly going to try.

I remember the baby in the hospital bed. I remember looking at his tiny body surrounded by machines and wondering what the world would ever look like for him. I remember wanting so badly to take his place. To carry the pain for him. To make his body work the way it was supposed to. To somehow make everything easier.

I couldn’t.

All I could do was stand beside him while he did the impossible things himself. Somewhere during those years, without me even realizing when it happened, my little boy became my hero. Not because he has never been scared. Not because he never struggles. Not because his story has a beautiful ending tied neatly around all of the painful parts. Because he keeps meeting this life exactly as he is.

Watching him stand in front of that camera as Luca Rising, proud of the person he has become, was one of the proudest moments I have ever experienced as his mom. I know what it took to get that little boy in front of that camera. I know every version of him that came before this one.

The baby in the hospital bed.

The little boy behind the doors of isolation.

The child learning to navigate a body that had been through so much.

And now this one.

The little boy standing confidently in front of a camera, choosing himself as the person who makes him feel brave.

That broke me a little in the best possible way.

For so many years, I was the one telling Luca he was strong. I told him he was brave before he could possibly understand why. I celebrated milestones other families probably never had to think about. I reminded him again and again that the things that made him different were also part of what made his story extraordinary.

Now he is old enough to begin understanding that story for himself. Instead of looking at his past and seeing something that makes him less, he wears it like a cape. His scars belong to him. His transplant belongs to him. His story belongs to him.

Someone asked my son to become the person who gives him courage. He didn’t choose Spider Man. He didn’t choose a well known superhero. He didn’t need to pretend to be stronger or braver than he already is. He chose himself. I got to stand there and watch my own hero realize that he could be his own, too.

I don’t know that there are words for how proud that makes me.

I spent so many years wondering who Luca would become if I could just get him here.

Now, I know.

Luca Rising.

My son.

My hero.

Most importantly, his own hero.

Birthdays are always special, but when you are a congenital athymia patient, every single birthday feels like an extraordinary gift. Every candle, every smile, every year is something worth celebrating BIG. Today, we are celebrating one of the original Three Musketeers, Juliana is five!

Five years of joy.
Five years of courage.
Five years of growing, laughing, learning, and bringing so much light to everyone around her.

This sweet girl has given us so many reasons to smile, and today we hope she feels just how loved and celebrated she truly is. Please join us in wishing the beautiful birthday girl the happiest 5th birthday! Happy Birthday, Juliana! We love celebrating you and are so grateful for the gift of another beautiful year. Keep rising, sweet girl!

Day 1754.

Being 5 to 10 minutes late with an iced coffee is no longer a time management issue. It’s branding. I’m already late. I refuse to also be uncaffeinated, frazzled, and left alone to manage the consequences of my own choices. This is medical mom life after all.

But today? We showed up to Luca’s appointments ON TIME, iced coffee in hand, and Luca is in a good mood. He’s happily participating in his therapy appointments, no longer shields his face when he hears my coffee clinking, and he’s talking nonstop.

Maybe some days arrive a little differently because they’re quietly making room for what comes next. Lately, it feels like something really good is waiting just beyond the horizon. Or maybe the universe is just buttering me up before I accidentally dump another iced coffee on Luca. Time will tell.

There are certain days that carry more weight when you live in the world of congenital athymia.

The day our fighters are are born.
The day you hear the diagnosis.
The day they receive their thymus transplant.
Every anniversary that follows.

These are some of the dates that become part of you. Today, we celebrate one of those dates for Syanne. One year ago, she received her thymus transplant. One year ago, after everything it took to reach that moment, Syanne was given a second chance to live.

Happy Thymus Day, sweet girl. 💜

An anniversary like this is about so much more than counting another year. It is about remembering the journey that came before it. The fear. The waiting. The isolation. The appointments, procedures, questions, and uncertainty. The days that felt impossibly long and the moments when all anyone could do was keep rising. Then there are the moments that make every hard day matter. Watching her grow. Watching her reach milestones. Watching her become more of herself. Watching a family begin to experience pieces of the life they spent so long fighting for.

Today is a day to look back at how far Syanne has come and to recognize every ounce of courage it took for her and her family to get here. There is still a road ahead, because that is the reality of this journey, but today we celebrate the ground already covered, and how far up the mountain they have climbed. This anniversary feels especially close to our hearts. The Luca Rising Foundation is incredibly proud to have Syanne and her mom as part of our team. They are not simply part of this community. They are helping us build it. Their experience, their strength, and their willingness to stand beside other families are part of what makes this mission so meaningful.

This is how we rise together. We rise for the families still waiting for transplant. For the families counting days in isolation. For those learning how to live after treatment. And for moments like this, when we get to stop and say: You made it another year. Today, celebrate Syanne with us. Celebrate her journey, her family, and every second chance made possible through thymus transplantation. One year down. So much life still ahead.

Happy Thymus Day, Syanne. We are so incredibly proud of you. 💜🧡