After a stressful pregnancy, a beautiful baby boy was born into the Di Benedetto family on a bright fall day. A brother to his older sister Gabriella, Gianluca (“Luca”) came quickly and immediately captured the hearts of his proud and relieved family.
Hours after he was born, doctors arrived to share the news that they suspected Luca had trisomy 21, a condition commonly known as Down syndrome. This came as a surprise since none of his prenatal screening had indicated the condition, including a blood test, series of ultrasounds, and even a fetal echocardiogram. A week later the diagnosis was confirmed.…
After eight months, the Di Benedetto family had settled into a routine and were well beyond the initial uncertainty they'd felt at trisomy 21 diagnosis. However, things changed quickly as Luca began experiencing infantile spasms, a rare and catastrophic form of epilepsy that, by his first birthday, had set his development back to the level of a newborn.
For his mother—Jenny, GVP, Strategic Services at the Lockwood Group—the sudden immersion into the intense world of patient care was unlike anything she had experienced. “I’ve learned more about navigating difficult conversations, managing polypharmacy, understanding the nuances of medical specialties, and embracing the power of patient advocacy than I had ever imagined.”
Fueled by a mother’s love for her son and the support of her family, friends, and coworkers, Jenny was determined to help Luca through the terrifying spasms, the overwhelming medical complications, and heartbreaking setbacks.
In the process, Jenny learned a lot more about our healthcare system than the typical medical communications executive. “It’s my job to help clients reach medical professionals to discuss unmet needs and advances in care. It was intense trying to learn all the medical nuances to identify and educate our care team myself.” But like all Lockwood team members, Jenny went above and beyond the call.
Today, Luca is thriving. And if you’re lucky enough to work with his mom, you’ll see how determined she is, and how well she understands the complexities of the healthcare system.