About Us

Today marks the one year anniversary of Luca’s thymus transplant. What a year it has been. The highest highs and the lowest lows. Life provided moments of beauty and moments of debilitating agony. In the end, life was continued, life was saved, and most of all our lives were forever changed. Luca has had a thymus for far longer than he lived without one. He has moved mountains, instigated faith, endured challenges, and beat every odd. He is courage and strength personified, and I am so proud to be his mum. 

I can’t tell the story of Luca’s heroic and incredible life without telling my story too. Our lives are so intricately and perfectly entwined. Before he could rise I had to learn to fly. He helped me grow my wings so that I could help him soar above, we endure this season of life to continue to grow and thrive. Our story is far from over, but today as we celebrate his first Thymus Anniversary I can’t help but look back and take in the incredible feats we have both risen over. When life tried to sink us both we learned to rise. We fought, and we have both succeeded. Luca is a testament to strength, determination, and courage. He rises, and I do too. 

Luca was born into a silent room. No sounds of breathing. No crying. No congratulations. The silence rang in my ears for the longest minutes of my life. Eventually a nurse told me he was okay. He was struggling but he was okay. I saw his face and suddenly the room erupted. I could hear the sounds of his birth and the sounds of the staff. I just couldn’t hear him. I saw Luca for only a short moment that day. He went to the NICU and I went to my room to recover. I always imagined the moments of him laying on my chest and letting motherhood sink in. Instead, I got to pass the new mums being brought in with their babies as I was brought to my room alone. Instead of baby cuddles I had a magnesium drip, steroids, blood transfusion, and blood pressure medications to keep my body from seizing post HELLP syndrome induced delivery. My own complications meant I didn’t get to even see Luca for the next 12+ hours.  

As the days progressed I heard from his nurses and doctors at the birth hospital. They told me they were doing their best. They said he was struggling, but he was a fighter. He went from intubation, to extubation with a cpap and then back to intubation within the first 36 hours. On day two they told me he had to transfer to another hospital. He needed more intense care than they could provide. It was in that moment that the sounds left the room again. I didn’t hear myself scream in agony and fear. I didn’t hear the staff try to console me. I didn’t feel my knees buckle as I fell to the ground. I just felt my heart beating hard and fast. I watched the team load Luca up in a travel isolet and wheel him away from me. My baby was two days old and we were being separated. He took a piece of my heart with him that day, he has it still. Of all the defining moments in my life, this is the one that changed me the most. It wasn’t motherhood that changed me, it was the separation. 

Forty seven minutes. That’s how long it took me to get back to my hospital room, call my parents, and get to the NICU at Cincinnati Children's. I had to be with Luca, he needed me the way I needed him. My body was on fire by the time we made our way to the building he was in. My c-section had hardly begun to heal and I was trying to make my way to him as quickly as I could. It didn’t matter. I just had to be with him, I pushed through the pain and walked the halls alone - I couldn’t wait for my mum to be credentialed and given access to his room, I had to go alone. I needed Luca, now. The moment I made it to his room I promised I would stay with him forever. He wouldn’t have to face the trials of life alone. I wanted to stand next to his isolet and be near him every moment, but my body was screaming. That second day was my physical turning point. My body wasn’t just feeling like it was on fire, it was ripping open. My C-section incision tore open and was bleeding through my bandages during the long walk in. That night my body was breaking as much as my heart. It was just the beginning. For five days we lived in that room. On the fifth day everything changed. 

It was early in the afternoon when the entirety of Luca’s NICU team entered his room. As the door opened and they came in it was like the air left the room and took the sound with it. I saw them speaking and gesturing at me. I saw them quickly packing Luca’s crib and transferring the medical supplies. I felt the panic and the severity of the situation, but I heard nothing. I was frozen and the room was in a frenzy. It felt like my own atomic bomb was slowly exploding, my own cataclysm. The frenzy, chaos, destruction, and an ominous silence. As if time fast forwarded, the room sucked me back in and it was all clear. Luca had failed his newborn screening. We were to be immediately moved into isolation. The revelation hit me hard. My world had just exploded. I felt the shockwaves, the pressure, uncertainty, and I finally heard the sounds. Within minutes we were in a positive pressure controlled room, everyone was in protective gowns, and again my world flipped upside down. 

The following days are a blur. They’re marked with trauma, pain, fear, and overwhelming emotions. It was in those days that we learned of Luca’s diagnosis. First it was 22q deletion syndrome. A small piece of the 22nd chromosome was missing and had caused a slew of complications. Next I was told he had to be trached. Following that was my second atomic bomb. Athymia. Luca was born without a thymus - a small gland near the heart that acted as the epicenter of the immune system. Without a thymus you cannot live. Without isolation and strict precautions he would be unlikely to live to see a transplant. My world was imploding. My perfect newborn was facing challenges I wasn’t prepared for. Life was so cruel. All I wanted was to hold him close and comfort him, make him see that I was there and he was safe. I couldn’t, for the first three weeks I didn’t get to hold him. I got to touch his frail body and hold his hands. I didn’t get to hug, rock, or comfort him. I just got to sit near him and admire the little life I had created. The life I so badly wanted to save. 

My world was shattered. From the deepest pits of darkness and despair there was a light, if only we could reach it. Most days I couldn’t see that light. I was in a downward spiral. Postpartum depression turned to psychosis and my life continued to crumble beneath the constant painful revelations the doctors were making. Luca’s team outlined the next steps and explained the transplant process. We were told the wait would be years. Life as we knew it was over. A life of isolation and precautions was mandatory if Luca were to have any chance at living. Gowns, gloves, masks, limited outside world contact, no visitors, and the start of the highest emotional walls I would ever build were just the beginning. 

In time I learned to cope. I learned to survive. I learned to find joy in the moments we had. I learned to be strong. I learned how to break down. I learned how to pick myself back up. I learned that life is unfair and unpredictable. Most of all though, I learned to love fully and fiercely. I made every decision with Luca’s best interests in mind. I supported him. I found more determination and tenacity in myself than I had ever imagined possible. My only goal was survival for us both. My life depended on Luca’s, and his depended on a transplant. Between insurance calls, calls with Duke Children's, and talks with the team everything fell into place. When Luca was five months old our fate began to change. 

I got the call on a busy afternoon. It was a woman named Christina. She was always cheerful and kind, but this day she was beyond bubbly. She wanted to call me herself to let me know that we had approval from a financial and clinical standpoint. The wait wouldn’t be long, she said. Luca was going to Duke. He was getting a second chance. Again, my world was silent. My thoughts couldn’t find an equilibrium with the life changing news I was hearing. It was like the air had been sucked out of the room again and I had to just wait for the boom. The boom never came. Instead some of the weight on my shoulders lifted and I finally was able to feel a new emotion, hope. The most faint of lights was twinkling for us and this time, I wasn’t going to let it go. 

The next month is another blur. Plans were finalized, our lives were again flipped upside down. When Luca was six months old, he and I boarded a private plane and flew to North Carolina. Our new future was waiting. We arrived at Duke University Hospital on June 8th, 2022. Luca was 201 days old, an infant who had known more trauma than fair. A precious little baby ready for the next chapter, ready to be defined by more than athymia, and ready to rise. 

The months leading up to Duke had been full of struggles, tears, begging for a chance, and determination. Arriving there and knowing that the second chance at life was near changed everything. I brought Luca this far, and I would continue to help him rise, but now he was on an unimaginable journey that he would have to pilot himself. He didn’t need me to carry him forward to find his success, he was doing it all on his own. I carried him to life - but from birth on, he was rising. He has always shown that he’s a force to be reckoned with, a force that won’t be stopped, and a force that knows no limits. 

We arrived at Duke scared, alone, and uncertain. The first night was lonely and dark. Luca didn’t mind. His place of comfort and security was in my arms, and I wasn’t letting him go. Slowly we became acclimated to the new area, we decorated room 2 and made it our new home. The staff was warm and enthusiastic to have us. Quickly we met our people - so many of the nurses and staff members became friends. They cared for Luca, they listened to me cry, they showed kindness, and they made us feel like we were where we were meant to be. It began to feel like a real home away from home. 

For over a month we waited for a thymus to become available. Luca had his typical bloodwork, tests, and cares - and then we’d wait. Everyday I would hope that today is the day they’ll tell me there is a thymus in the lab for Luca, today, please let it be today. When finally the news came we made a new plan of action to take place a week before transplant. The prep was extensive, he underwent the necessary immunosuppressant procedures, ATG which wiped out any immune system cells he had and he began cyclosporine which would weaken his immune response post transplant. This was a turning point. Luca’s body began to respond poorly to his routines and medications. Food was no longer kept down, and he was losing weight.  He pushed himself as hard as he could and on July 12, 2022 Luca received his thymus transplant. Our new life began that day. 

That fateful morning in July I put Luca in his surgical gown and hugged him close for hours. I was scared but excited. This was the second chance, his life depended on this day and he had to do well. He just had to. Eventually, it was time. I held his hand the entire way to the pre-op area. I held him close as his surgeon marked his legs and explained the procedure again. He was in good spirits, happy and smiling when the team came to roll him to the operating room. Again, I watched my baby travel down the hall away from me. The silent tears burned my cheeks. My heart was beating quickly. I could feel the rhythmic thumping through my body. It was in that moment that I started to feel relief and felt the burden start to ease from the last time I saw him wheeled away from me. Luca had to go, this had to happen - it was the only thing that was going to keep his heart beating too. His life was about to change forever. 

The surgery took hours. It was an excruciating time, just waiting for the moment when I could be close to him again. I couldn’t help but hover near the reception desk at the post anesthesia care unit. I wanted to see him, I needed to touch him and know he was okay. Finally, it was time. I rushed to his side and held him close for hours. He was suffering so deeply. The pain from the deep incisions on both thighs was traumatic and so fresh. Eventually we made it back to his room and we saw his bandages. The surgeon had drawn caterpillars on both legs. She could see it too, she knew he was blossoming and rising. Again the tears burned my cheeks. The fire of my rising Phoenix was part of me too. As I let the emotions that were holding me back go, I was able to rise as well. 

That night I held Luca while I sat awake and just took in the moment. We both faced our second chance; while we wouldn’t know the success for months to come, I was able to breathe a little easier that day. At six months old Luca accomplished what should have taken years, he was transplanted, he was given a chance. The days of recovery that followed were hard. Managing his pain and propelling him to use his legs was a challenge. A week in and we could remove the bandages. As I pulled the bandages off it was almost as I could see his wings growing. My caterpillar was becoming a butterfly before my eyes. His scars were glaring from his thighs, a sign of how far he had come and a hope for how far he would go. 

Recovery went well in terms of how his legs were doing, but his body was suffering. For the next two weeks before we went back home to Cincinnati Childrens Hospital Medical Center Luca struggled with vomiting at least eight times a day. He continued to lose weight, eventually he began to lose some of his spirit too. You could see it in his face, he was tired and he was sick. By the time we flew back Luca was sick, dehydrated, and weak. It was just the start. 

Shortly after arriving back home at CCHMC Luca tested positive for his first virus, adenovirus. This hit me terribly hard. I had kept him safe and illness free his entire life, and now when everything was supposed to be improving he was sick. Sickness in a child with athymia is literally life or death. The guilt I felt was overwhelming and debilitating. I was naive to think this was all we would soon face. Immediately the team made a plan, we would trial a new antiviral medication, start him on TPN feeds directly into his picc line, and he would have constant fluids to help with the dehydration. 

Step one was the beginning of the downward spiral. Luca was less than three weeks out from having his transplant, and the challenges were mounting. His picc line seemed to no longer be viable. After two attempts to use it the team was able to push through the line and begin TPN feeds. Within ten minutes of the line being accessed again Luca went into septic shock while in my arms. I saw his body struggle to breathe, he shivered, and his body temperature dropped as well as his blood pressure. Immediately I called for the team and we began to treat him. His body was failing. We transferred to the ICU, he was put back on a ventilator, and I felt the traumas from the NICU haunting my thoughts. Panic and fear were all I could feel as I watched my lifeless baby lay in his crib. He was so small and hopeless. This time I felt the bomb exploding. I was the bomb. I was angry and scared. My baby had been through enough and here we were facing uncertainty again. 

We stayed in the PICU for a couple of days. When Luca was well enough to go off of the ventilator and his body was recovering from sepsis we transferred back to the BMT floor. We were both still feeling the shockwaves of the bomb we’d just experienced when life dropped another. Luca tested positive for CMV. Cytomegalovirus is passed through bodily fluids, it’s why I had to be tested weekly before Luca could have breastmilk and another reason why isolation precautions were so important. The virus was caught early which meant we spent the next week watching the numbers raise and then plateau. Luca was living a nightmare. Murphy’s Law was controlling our lives. CMV came as such a shock because I don’t have it and he is in constant protection, the slip up location is something we will never be certain of. 

The first month following Luca’s transplant was full of trauma and setbacks. As the days progressed though he became stronger, he cleared adenovirus and then he cleared active CMV. He will forever have CMV now, we just hope it stays inactive and doesn’t cause issues. He fought his way off a ventilator and brought his body back to a healthy place from sepsis. He rose over every setback and challenge. He showed that nothing would hold him down. 

The months continued and Luca progressed. His milestones were met on his own time, and he began to enjoy the life he was given. He finished his summer and celebrated turning 9 3/4 months old, he made new friends, and he touched more hearts. As autumn began we made plans for the future. It was time to go home, start the life he deserved, break free of the hospital walls. We had a plan, Luca was doing well and it was time to rise higher. October 1st everything changed. 

This is a time it’s challenging for me to write about, both from an emotional standpoint and a memory one. On October first while looking for photoshoot props for Luca I fell through the attic and onto the cement floor of the garage. I couldn’t find the one prop I needed and was on the phone with Joe for help as I looked, a phone call that likely saved my life. He heard the commotion as I fell through the attic and hit the cement, he sent his parents to check on me when I was not responsive to him. They found pools of blood and me unconscious, immediately I was taken via ambulance to a level 1 trauma center.  My brain was bleeding, my skull fractured, and three vertebrae broken. The next two weeks I don’t remember - I spent time in the ICU as well as the neurology ICU recovering and regaining consciousness. I have looked at the photos, heard the personal accounts, and I still have the physical and emotional issues that came from the accident, but I thankfully have no memory of it or the following weeks. During my time away and recovering Luca continued to flourish, he showed that he could still rise without me. By the end of October I discharged from the hospital, and the same week he did too. 

On October 28th everything changed again. Luca came home for the first time. He spent 343 days living in three hospitals, but finally, he was home. Life still didn’t look the way I had planned, but it was getting better. My baby finally made it to where he belonged. We spent weeks finding our new normal and getting used to life being flipped upside down. We struggled, but we made it. Soon after, we celebrated his first birthday. At birth we were told to prepare for the worst, and here we were celebrating how far this champion has gone. As I watched him play in his smash cake I knew that better days were coming still, but also - better days were here. 

As Christmas neared it became apparent that Luca was sick again. We spent nearly two weeks inpatient while the world celebrated the Christmas season. Luca fought rhinovirus and went home just over a week before Christmas, another dream was coming true. I got to spend Christmas with my family at home, the day was magical. Luca took it all in and enjoyed every moment, seeing the way he lit up made some of the traumas of the last couple months fade away. 

In a blink the days became weeks and months. We began his monthly T cell checks, helped him reach more milestones, went to the hospital more times than I can count, and eventually I blinked again. That little baby I fell in love with wasn’t a baby anymore. He is a toddler, growing and changing by the day. His skills and actions are growing with him, his body changing and he looks so grown up. He is so independent but still wants his mum when he’s scared or tired. The best part of having a child has been watching him grow up, it’s also been the hardest. With every blink the moments come and go and his life passes us by. I learned not to take the moments for granted during this time. I appreciate every moment with Luca and realize how lucky we are to have this time, this life, and this love. 

The months have passed and now he’s over a year and a half old. We are in the midst of summer and the days are all precious and fast. Luca is rising higher than ever, and his T cell counts are trailing in his wake. He can’t be stopped. He has faced trauma, challenges, life altering diagnoses, and still he rises above it all. Today we celebrate not only the anniversary of his thymus, but the life he has led. A life full of trauma and defined by courage. A life that was saved. A life that will change the world. Three hundred and sixty five days ago a baby was given a transplant and his life was forever changed. Today that same person is not a baby but the newest toddler to soon join the ranks of the immunity community. In just over two weeks Luca will meet family and friends for the first time. He will slowly explore the world and see photographs from the Love for Luca project. He will have the opportunity to explore the world and see that the world is as big as the love for him has reached. His dreams, and mine are all coming true. 

Life for Luca has been hard fought and earned. Life is full of beginnings, and this is another one. From the days of uncertainty to the days of freedom we will soon welcome, Luca has become a symbol of strength and perseverance not only for me but for all who know him. As his community expands and our love grows we watch him do what he does best, he rises. 

Luca, the world has been waiting for you. You will change it as much as it will change you. You’re going to live so fully thanks to the journey you have faced.  Happy thymus anniversary, the best days are coming for you.