From the moment Liz and John Foley discovered they were expecting their youngest son, their hearts were filled with excitement. That joy shifted when prenatal genetic testing revealed Luca had a high probability of Trisomy 18, a rare and often life-limiting condition.
Trisomy 18, also known as Edwards Syndrome, is caused by an extra copy of chromosome 18. This disorder can impact major organs, including the heart and lungs, as well as cognitive development and physical growth, making life expectancy for affected children short.
Though the news was devastating, Liz and John resolved to welcome their son with open arms. They were determined to meet Luca and give him a life filled with love and attention, no matter how brief it might be.
Early access to specialists at The Chicago Institute for Fetal Health provided the Foleys with guidance and reassurance. Doctors and counselors helped them navigate each step of the pregnancy, preparing for the journey ahead.
On September 15, 2022, Luca was born, completing their family of four. His name, meaning “Bringer of Light,” perfectly reflected the joy and brightness he brought to the family in his short five months of life.
Luca’s time with his family was filled with moments of connection and fierce love. His older brother, Johnny Len, delighted in tickling his toes and reading stories, bonding with his little brother even in the hospital environment.
Despite his diagnosis, Luca displayed a remarkable strength and will to live. He faced every challenge with courage, from the prenatal diagnosis to his daily care in the NICU, leaving a lasting impression on everyone who met him.
Throughout their journey, Liz and John were deeply supported by the Lurie Children’s team. The hospital staff extended compassion not just to Luca but to the entire family, creating a sense of belonging and trust during an incredibly difficult time.
The Foleys recall how more than twenty members of the Lurie team attended Luca’s funeral. Their presence and support spoke volumes about the commitment and heart of the clinicians who cared for Luca.
The experience inspired Liz and John to honor Luca’s life in a meaningful way. They created the “Lap the Lake for Luca” fundraiser, a 954-mile bike ride around Lake Michigan, to raise awareness for Trisomy 18 and support the Lurie NICU.
John dedicated himself to months of training, facing challenging weather and grueling terrain. Liz joined him for the final leg, sharing in the emotional and symbolic journey of honoring their son.
The fundraiser not only commemorated Luca’s life but also rallied the community around families affected by rare diagnoses. Through bake sales, trivia nights, golf outings, and yoga events, the Foleys’ story inspired thousands, raising over $70,000 for Trisomy 18 patient care and research.
Even though Luca’s time with them was brief, his presence left a permanent mark. Friends, family, and even strangers were touched by his story, carrying his light forward in acts of love, remembrance, and advocacy.
The Foleys emphasize the importance of cherishing every moment, even in the face of life-limiting diagnoses. Luca taught them to embrace gratitude, celebrate love, and find beauty in fleeting yet profound experiences.
Through their journey, Liz and John witnessed the extraordinary dedication of the Lurie Children’s team. From prenatal counseling to intensive NICU care and ongoing support after Luca’s passing, the hospital provided comfort, guidance, and a sense of family.
The Lap the Lake fundraiser stands as a lasting tribute to Luca’s life and legacy. It exemplifies the power of community, the impact of advocacy, and the enduring light a child can leave behind.
Luca’s story continues to inspire families facing Trisomy 18. His courage, strength, and the love surrounding him show that even the briefest lives can teach lessons of resilience, hope, and human connection.
For the Foleys, Luca will always be a reminder of what truly matters. Love, presence, and gratitude shine brighter than any challenge, leaving a legacy that transcends the limitations of a diagnosis.
Luca’s light lives on in every act of kindness, every story shared, and every effort to improve care and support for families facing rare diagnoses. His memory inspires hope and change, touching countless lives far beyond the walls of the hospital.