Imagine your three month old baby having 40-80 seizures in a day, suffering from severe muscle weakness and developmental delays. For Giovanni’s mother, Star, it was almost too much to bear.
Giovanni was diagnosed with Tuberous Sclerosis or TS. This genetic condition is a rare disease that causes tumors or growths in the brain, skin, kidneys, eyes, heart, and lungs. One in 6,000 babies are born with TS. There is no cure, but there are treatments, and with help from Children’s Specialized Hospital, Giovanni is making progress that his mother calls nothing short of miraculous.
Brain surgery and medication have left Giovanni seizure-free. Following the surgery, he was transferred to Children’s Specialized Hospital where he received three-months of extensive inpatient rehabilitation from a team of therapists, nurses, and doctors who Star says have become like family. This extended family of caregivers was there cheering him on when Giovanni took his first steps and fed himself for the first time.
Giovanni still receives outpatient therapies including physical, occupational, and speech therapies at CSH. It has been a difficult four years for Giovanni and Star since he was first diagnosed with TS, but with the support of his team at Children’s Specialized, he is making strides that seemed impossible before.