Gina Marie Rugari was born to Anne and Phil Rugari on December 23, 1999. She was born with Krabbe Disease, just like her older brother Nick, who died in 1987 at the age of one. Gina’s oldest brother, Phil Jr., was born without the disease. Gina was just one year old when she received a new procedure at the time, called an umbilical cord blood transplant.
Anne and her then-husband Phil were carriers of the genetic mutation that causes Krabbe. They didn’t know they were carriers until their second child, Nick, was born 13 years prior, who at the time was only one of 10 children known to have the disease. After Gina was born, she was diagnosed at 2 weeks old. The following week, the family rushed off to Duke University, where Gina underwent 9 days of chemotherapy to wipe out her immune system so her body would accept new blood from the umbilical cord blood transplant that would be performed once she got a little older.
Even though Gina had the daily struggles of the disease and many hospital procedures, she continued to thrive as a young girl. She continually amazed the doctors at Duke and UNC with strong results from the transplant she received as an infant. Gina’s best friend was her companion dog, Bella Rina, a sweet little five-pound Maltese who would be seen by her side at all times. Not only did Gina live life like any normal kid by attending public school, she excelled at all she touched. Gina became a social butterfly – attending school activities, participating in marathons with her mom, going to parties, and even playing dress-up. She was also a Girl Scout who kept her mom very busy with her social calendar.
Gina surpassed all expectations and lived a vibrant and happy life for almost 16 years. Gina left us on June 22, 2015 to be with her older brother, Nick.
Thank you, Gina and Nick, for making the world a better place.