About The patient

Luca Discepoli is the inspiring subject of the blog "Luca Rising," a platform dedicated to sharing his extraordinary journey and raising awareness for an ultra-rare medical condition. Luca was born with Complete DiGeorge Syndrome, a genetic illness that affects only an estimated 15-20 babies in the United States each year. This diagnosis meant he was born without a thymus, a critical organ for the immune system, leaving him incredibly vulnerable to infections.

His life began with immense challenges, starting with a traumatic birth where he struggled to breathe and was immediately whisked away to the NICU. Within days, he underwent a tracheostomy, and further testing revealed the severity of his condition. His first year was spent inpatient, followed by continued isolation until he was a year and a half old, highlighting the constant medical care and vigilance his condition required. The blog chronicles the "highest highs and lowest lows," filled with moments of beauty alongside debilitating agony, all demonstrating his remarkable will to live and thrive.

A significant milestone in Luca's journey was his thymus transplant, a complex and relatively new procedure, performed at Duke University Hospital on July 12, 2022. This medical miracle offered hope for Luca to develop an immune system. Following the successful transplant, he has gradually been able to leave isolation and engage with the wider "immunity community." However, the path to full recovery is long, involving ongoing medical needs, therapies, and hospital visits. The blog openly shares the realities of raising a medically complex child, including the mental, physical, and financial strains it places on families.

Despite the numerous obstacles, Luca is a testament to strength, determination, and courage. His story, as told through "Luca Rising," not only highlights his personal triumphs but also serves as a source of inspiration and support for other families facing similar challenges. The blog, maintained by his mother, emphasizes the importance of community support, raising awareness, and contributing to the cause of congenital athymia, aiming to create a healthier, safer world for children like Luca.