Rebecca Santos took her son Jordi, who has severe oxygen-related brain damage, to Mexico at 10 months for Dezawa MuseCells stem cell therapy, unavailable in the U.S. at the time. He recovered quickly from sepsis and pneumonia; Santos believes MuseCells helped.
After Jordi's diagnosis, Santos said she found many statistics on severe HIE were outdated. She learned about Dezawa MuseCells through the Hope for HIE Facebook group and said her son's neurologist had not heard of the treatment. Before the Mexico trip, Jordi had 11 hospitalizations for respiratory problems; doctors later judged him strong enough to travel. About a week after he returned, he developed a severe bloodstream infection and pneumonia, was intubated for six days and left the hospital less than a week after extubation, Santos said.
Santos says she speaks publicly to raise visibility and acceptance for children with similar diagnoses, and that they deserve the same treatment as any other child. She describes the financial burden as heavy and says Jordi will probably face a lifelong struggle, while hoping he may one day play, use his hands, stand or communicate how he feels.
