For new parents Lucy Shaw and Wesley Sadler-Davey, the arrival of their baby boy Luca on October 10 this year was a dream come true. After experiencing difficulty conceiving, the 25-year-olds from Kent felt their world was finally complete. For two weeks, everything was perfect with their seemingly healthy newborn son.
A Sudden and Terrifying Turn
That blissful new-parent bubble shattered one morning when Luca woke from a nap. His tiny body was burning with a fever of 39.9C (104F), he had developed a rash, and his abdomen was swollen. The couple, both healthy themselves, were terrified and rushed him to their local hospital immediately.
Doctors, suspecting the life-threatening infection sepsis which is common in infants, started Luca on antibiotics straight away. However, his condition worsened rapidly, leaving local medics unsure of the next steps. He was transferred to an intensive care unit at a different hospital for more specialised tests.
The Rare Diagnosis: HLH
It was there that consultants began to suspect a far rarer and more dangerous condition: Hemophagocytic lymphohistiocytosis (HLH). This severe autoimmune disorder causes the immune system to attack the body's own tissues and organs, leading to extreme inflammation and potential organ failure.
Luca was subsequently transferred to the world-renowned Great Ormond Street Hospital (GOSH) in London, where he has remained for the past six weeks. His treatment has been intensive, involving a chemotherapy drug called etoposide to kill the overactive immune cells causing the damage.
"We were at one point fearing he wouldn't make it," Lucy confessed. Yet, throughout the ordeal, little Luca has remained remarkably bubbly and cheerful, astonishing his parents and nurses with his strength.
A Path Forward and a Plea for Help
There is now a glimmer of hope. Luca has been approved for a vital bone marrow transplant, scheduled for January 26, 2026. The donor is an "amazing" 21-year-old stranger. Before the procedure, Luca will undergo another week of chemotherapy to further suppress his immune system.
Lucy and Wesley have not left their son's side, meaning neither has been able to work. They face the daunting prospect of needing to stay in London for at least a month post-transplant. To cover their living costs, bills, and expenses for Luca's care, the couple has launched a GoFundMe page with a target of £2,800.
While they know Luca will likely face lifelong monitoring and potential side effects from his powerful treatments, the upcoming transplant offers a crucial chance at a future. For now, their entire world is focused on supporting their brave two-month-old through the fight of his life.
