To know Luca is to love him. He is seven and a half months old, six months adjusted for prematurity. Luca is a celebration of life in every way; from being a rainbow baby to defying all odds against him since birth. We call him our little Phoenix because he always rises above. From a traumatic birth, harrowing early life experiences and diagnoses, Luca always rises.
When Luca was born he didn’t make a sound. It was clear from the start there were complications. He was immediately extubated to allow him to breathe properly. When he was just two days old he was transferred to another NICU for more intense care. It was there we found out that Luca’s newborn screening showed markers for SCID (severe combined immunodeficiency) this meant Luca had to be immediately put into isolation. From that day on Luca’s entire future changed. We would soon learn he had an in incredibly rare genetic condition, 22q11.2 with complete DiGeorge features. This meant that Luca was missing part of the 22nd chromosome, and could have vast disabilities and medical issues. Every patient is different, so explaining Luca’s future was a challenging task for the doctors.
As the days went on more testing was conducted and it was decided that Luca needed to be trached. He has a webbing in his airway preventing him from breathing without assistance. At two weeks old Luca was one of the smallest babies to be trached. He required the Trach and a ventilator to breathe, but still he was learning and growing. Days turned into weeks, Luca thrived. After three months of ventilator support, surgeries, and procedures Luca was able to breathe on his own with the Trach. It was finally time to discuss the future.
Patients suffering from Complete DiGeorge Syndrome do not have a thymus, the epicenter of the immune system. Because of this they are profoundly immunocompromised and require a rare and challenging thymus transplant to live. There are only two hospitals in the world that perform these transplants, Duke and GOSH in London. We were told it would take years for the transplant to be available to Luca.
That changed around his six month birthday in May. We got the life changing call from Duke telling us he had not only had passed the medical check, but he also had insurance approval and funding for the procedure. It would be only a matter of months before we were on our way. If Luca has taught us anything it’s to expect the unexpected. This was truer than ever when we got the call in early June to be ready to fly, that week.
On June 8th we flew from Cincinnati to Durham and checked into Luca’s third hospital, Duke University. We waited for just over a month for the right Thymus tissue to become available. We are so thankful for the donor and their family, and pray the procedure they had went well too. (Thymus tissue is a byproduct of cardiac procedures.) On July 12, Luca received his miracle. The Thymus tissue was implanted into both of his thighs. The process for the Thymus to “educate” the t-cells is long and grueling, but we have no doubt that he will beat all of the statists. On average, it takes 6-9 months for t-cell production, we hope to be out of isolation and living our best lives with Luca by next spring. Duke University changed our lives. This procedure gave us hope. We have a future with Luca because of the brilliant minds at work here. The gift our donor and the team here has given us is immeasurable. There is no obstacle Luca can’t overcome, no feat he can’t rise above, and no limit to what he can do. Luca is a boy rising, overcoming, and thriving. He defies all the odds, and is the epitome of strength and resilience. #LucaRising