Allegany County boy is first in the world to receive special gene therapy

Six-year-old Conner Hess
(Boston Children’s Hospital Photo via WIVB-TV

A six-year-old Allegany County boy has become the first person in the world to obtain a special gene therapy for a deadly genetic condition called adrenoleukodystrophy (ALD).

Conner Hess of Swain was discharged from Boston Children’ Hospital Sunday, according to WIVB-TV 4 at Buffalo, but will be returning to Boston every four-to-six months initially, which will decrease over time, for treatment.

The youngster was diagnosed with ALD as a newborn, according to the report, due to New York State being the first in the nation to start screening at birth for the rare genetic condition. His mother, Richelle Brooks, has since found she also has ALD.

Days after Conner’s diagnosis, the U.S. Food and Drug Administration (FDA) approved a gene therapy called Skysona, which was particularly positive news for the boy, since a good bone marrow match for a stem cell transplant had not been able to be found.

The full report on the genetic condition and therapy is available at