In her short life, Luciana was a ray of sunshine, leaving behind a legacy of pure joy and love despite her battle with a rare and debilitating illness. Though she faced immense struggles, Luciana was described by her parents as the “happiest and sweetest little girl we have ever known.”
Luciana’s parents first noticed something was different when she started missing key physical milestones. While she could scoot, roll, and prop sit, by nine months old, she wasn’t crawling or sitting unassisted. At ten months, she experienced her first seizure, which led to a hospitalization at eleven months. During her hospital stay, an MRI revealed brain abnormalities, prompting genetic testing.
When she was 18 months old, Luciana’s test results finally came back. She was diagnosed with Leigh syndrome, a progressive and severe form of mitochondrial disease. The diagnosis day was devastating for her family. A doctor showed them a PowerPoint presentation of the disease, explaining that it was passed down from Luciana’s mom, Marisa. The doctor bluntly told them to “take her home and enjoy her because she wouldn’t live past two.” But Luciana defied the odds, living a life full of love and happiness far beyond that initial prognosis.
Luciana found joy in the simple things, surrounded by a loving family. Her parents, her dog Ruby, and her three cousins were her biggest cheerleaders. She loved music, especially Disney songs. Her favorite movies were Moana, Frozen, and Encanto. Reading was another favorite pastime.
She especially loved visiting Walt Disney World, a place she was able to visit three times, once through the Make-A-Wish foundation. Watching her light up with magic on those trips is a cherished memory for her parents. Time spent at their family cottage up north, swimming, and being outside were also moments that brought her great happiness.
When asked what advice she would give to a family with a new diagnosis, Luciana’s mother Marisa urges them to take it one day at a time. She advises parents not to blindly trust what they find on the internet, which can be full of grim statistics. “Google might say you’ll only get two years with your baby,” she said, “but Google doesn’t know how strong they are.” She stresses the importance of cherishing every good day and taking lots of pictures.
To cope with their grief and carry on Luciana’s memory, her family started a non-profit foundation called Luciana’s Legacy. Through this organization, they are able to give back and help other families and children with rare diseases like Leigh syndrome, turning their pain into a powerful force for good. They want people to remember that even with her struggles, Luciana was the happiest little girl they’ve ever known, and her legacy continues to spread joy and hope to others.
