Agustin Caceres’s baptism was the only time his family was allowed close to him. But even then, anyone who came in contact needed to wear masks, gloves and gowns. After the ceremony, Agustin went back into isolation, along with his mother Marcela, who stays with him and only comes out for meals.
Agustin spent much of his life separated from the world because he has a form of X-linked Severe Combined Immunodeficiency—or SCID-X1—better known as “bubble boy disease.” It affects only boys, leaving their bone marrow unable to make T-lymphocytes, the white blood cells that fight germs and infection.
To keep Agustin safe, his father, Alberto, and his four-year-old brother, Jeremias, live in a separate bedroom. At one point Jeremias even left his nursery school to make sure he couldn’t bring home any infections his baby brother might catch.
Unfortunately, this is not the Caceres’s first experience with SCID-X1; their first son was also born with the disease and died from it before he was even 5 months old. So when Jeremias was born healthy, the family banked stem cells from his umbilical cord blood to benefit future treatment, should they have another son born with the disease. At first doctors were hopeful Jeremia’s stem cells could be used to treat Agustin, but the boys’ tissues weren’t compatible. Without intervention, Agustin was likely to die from a bacterial or viral infection before his first birthday. …