Severe Combined Immunodeficiency, SCID, also known as the Bubble Boy disease, is a rare genetic disorder caused by numerous genetic mutations. Patients with the disease are affected by bacterial, viral or fungal infections.
A 10-month-old baby boy with the disease has been narrowed to his sanitized house for life, only leaving for visits to the doctor. Sebastian Romero, from Texas, got diagnosed with SCID two weeks after his birth. Any illness exposure, even the common cold, could end his life because his body can’t fight off the disease.
In efforts to save Sebastian, doctors at the Texas Children’s Hospital performed a stem cell transplant in May. The doctors got rid of the defective white blood cells with chemotherapy and replaced them with the baby boy’s mother’s cells through blood transfusion.
The transplant was a success, but it could take a year or even longer for Sebastian’s body to assimilate his mother’s blood. His mother, Blanca Romero, told the Daily Mail Online their family has to shower and change clothes immediately when entering their house.
She said they would continue with the necessary safety precautions until they know a cold won’t send Sebastian to the hospital. Blanca said she and her husband, Emil, sanitized the entire house. They put five air filters around the house and converted the master suite into an isolation room.
“Sometimes,” Blanca said, “the stress of it all seems like too much to deal with.” But Blanca knows Sebastian is fortunate to be alive. Only about 60 babies are diagnosed with SCID in the U.S. each year, and not all have Sebastian’s fortune to hope for a cure.
In November, Sebastian got sick of a phlegmy cough. Blanca rushed him to the hospital where the doctors confirmed he had Croup, a respiratory infection common in toddlers. The virus can be deadly in SCID babies. Sebastian recovered after a few weeks, indicating his immune system is growing stronger.
SCID became widely known during the 1970’s and 80’s, when David Vetter, a boy with the disease, also from Texas, lived for 12 years in a plastic, germ-free bubble. Vetter also underwent bone marrow transplant, but his body rejected it.
This article was inspired by Houston Chronicle // On the bubble: Family of baby with rare disease not taking risks