08/12/2026
Day 1728.
Years ago one of my friends told me that someday I would have days that I dared to dream of. It would happen slowly, these little changes when our normal would begin to mirror the life I always imagined. We would go out into the community. We would attend family parties. We would live a full life. At the time I would sit silently and listen as these words were spoken, I didn’t really believe it. Slowly and surely though, our days became full of fun childhood experiences and less about the hospital we desperately wanted to leave behind.
Ironically enough, today I checked in at the B desk at Cincinnati Children’s. That same hospital we lived in for years. The same place that carries ghosts of our past. I’ve stood at that desk more times than I could ever count, just as recently as last week for Luca’s procedure, but the first time is the one I remember the most. It was day 2. Luca had been transferred to Children’s and I checked in alone. I was scared, confused, and still trying to understand what was happening to my baby. I didn’t know the language yet. T cells. Athymia. Immune deficiency. I didn’t understand that we were at the beginning of something that would consume almost every part of our lives.
For years, that desk meant I was getting a visitor badge or a surgery badge. Today, the security guard behind the desk handed me a guest badge. I actually stopped and looked at it instead of absentmindedly putting the sticker on my chest. I was a guest. Luca was a guest. We had an appointment with multiple physicians and nurses, but as guests. We were there for something bigger than ourselves. We were there for a meeting. For the Luca Rising Foundation. While that may seem like such a small detail, if you know what those hospital years did to me, it isn’t small at all.
We met with several prospective members of our Medical Advisory Board, including two of the people who were there during the worst of it. They knew Luca when keeping him alive was the priority. They knew me when I was trying to absorb medical information, make decisions, advocate for him, and somehow remain a functioning human being at the same time. Today, I told them more about what was happening to me during those years. They knew the clinical story. They knew how sick Luca was. They didn’t necessarily know how dark it became for me. I talked about that today.
I told them about how completely lost I became. About what prolonged isolation and constant fear actually do to a parent. About trying to care for a critically ill child while quietly unraveling yourself. It was vulnerable and uncomfortable, but it mattered. When we talk about what the Luca Rising Foundation needs to become, I don’t want to build it around what we think families need. I know what I needed. I needed someone to tell me what came next without making me feel stupid for not knowing. I needed another parent who understood why a normal cold terrified me. I needed information that didn’t require a medical degree to decipher. I needed someone to care about whether I was surviving too. Most of all I needed to know there was a life somewhere beyond that hospital room.
I used to think about that future while we were still living the worst parts of our story. What if there were something better for the next family? What if congenital athymia families could find each other and actually bond? What if there were resources waiting for them instead of parents searching the internet at 2 a.m.? What if physicians had somewhere to send a newly diagnosed family? What if we actually knew how many patients were out there, what their journeys looked like, and what happened years after treatment? Today, I sat in Cincinnati Children’s talking about making those things real.
We talked about a congenital athymia registry. We talked about research, education, the gaps families are still falling through, and what physicians need from us versus what families need from us. Through this very serious and impactful conversation, Luca was playing. He was making car noises that sound like they should accompany a check engine light. He drove his cars and busses around the room, miraculously enough sometimes they even flew around the room. Out of the corner of my eye I would see him stop for cuddles upon occasion before going back to the cars. At his core Luca is the sweetest kid, he truly just wants to bond with every one.
I was almost finished with the presentation when the absurdity hit me. I was presenting about our life, our needs, our goals, and the future we wanted to create. Here was Luca, the namesake of our foundation living his best life. The kid whose diagnosis introduced congenital athymia into my vocabulary in the first place. The kid who spent his first year in hospitals, who had a trach, a ventilator, a feeding tube, endless medications and procedures, and who needed a thymus implantation for a chance to develop an immune system. Now he’s interrupting a Medical Advisory Board conversation with car noises and hugs. Pinch me. How lucky are we to be living this life.
Somewhere in that meeting, between the engine failure noises and sharing stories of other families, I felt the weight of what we are actually building. It is incredibly humbling to carry not only our story but stories of the families who came before and after us forward. I never asked to know this much about congenital athymia. I certainly never imagined that one day I would be sitting with physicians talking about registries, research priorities, family support, and what needs to change. I learned all of this because I had to. Because Luca needed me to.
Now families I haven’t even met yet are part of the reason I keep learning and growing as an advocate, a writer, and now a founder. That responsibility isn’t lost on me, neither is the privilege of getting to build something from everything Luca endured. We have the chance to create a legacy that reaches much farther than our own story. Something that will still be here when another baby fails a newborn screen, when another parent hears “congenital athymia” for the first time, when another family is suddenly trying to understand a life they never expected to live.
I don’t take lightly that I get to carry this. Some days, if I’m being truthful, I still wonder whether I’m capable of carrying something this big, I feel like I’m not going to do the families justice. Then I think about where we started. I think I understand our mountain analogy differently now, too. When you’re at the bottom of this mountain, you can’t see much beyond the piece directly in front of you. You aren’t thinking about changing systems or building registries. You’re trying to get through today. Then tomorrow. Then the next lab result, infection, procedure, setback, or decision.
We have climbed far enough now that I can turn around and actually see where we have been. More importantly, I can see where the dangerous parts are - the scary parts, the parts that make you feel lost, and the parts where you don’t think you can take another step forward. I know where we needed a hand and there wasn’t one. I know which information came too late. I know what isolation actually costs a family. I know that “support” means very little unless someone understands what Tuesday afternoon looks like when your child has no functioning immune system and the rest of the world is carrying on normally.
We aren’t standing at the top of the mountain. Not even close, but we’re high enough now to see what it is going to take to get there. We are high enough for me to fully understand that you don’t reach the top of the mountain, you are lucky enough to have the chance to keep pushing forward. We’re finally in a position to start leaving something behind for the people climbing after us. A map. A hand to hold. Someone who knows the terrain. Maybe, eventually, a path that is a little easier to follow because somebody climbed it first and refused to leave it the way they found it.
Today, two of the people who helped us survive our own climb agreed to join the Luca Rising Foundation team. That part is hard for me to put into words. These are people who knew us when there was no Luca Rising Foundation. There was just Luca, there was me, and there was a mountain. I didn’t fully understand the diagnosis, I was fearful of everything and I was trying to climb a mountain while feeling like I was rolling down it instead. Four years ago I never imagined that we’d all be sitting at a table talking about the future of congenital athymia. Then I looked over and watched Luca playing. I don’t need a better full circle moment than that.
Years ago, I checked in at the B desk and was handed an ID badge because my son had been transferred to the hospital and I was terrified of what was waiting for us. Today, I checked in at that same desk and they handed me a guest badge. I was there for business. A step towards building something out of the hardest years of our lives. To carry not only Luca’s story forward, but the stories of all the families affected by congenital athymia. To create something that belongs to every family who comes after us. What an incredibly humbling thing it is to be trusted with that. What an incredible legacy we get to build. Turns out, that little guest badge meant a lot more than I expected it to.
