60 SMITHSONIAN.COM | December 2019N THE MORNING OF APRIL 25, 2018, in Fort Wayne,
Indiana, Omarion Jordan came into the world
ten-fi ngers-and-toes perfect. His mother, Kris-
tin Simpson, brought her dark-haired newborn
home to a mostly empty apartment in Kend-
allville, about 30 miles to the north. She’d just
moved in and hadn’t had time to decorate. Her son, however, had
everything he needed: a nursery full of toys, a crib, a bassinet and a
blue octopus blanket.
Still, within his fi rst couple of months, he was plagued by three
diff erent infections that required intravenous treatments. Doctors
thought he had eczema and cradle cap. They said he was allergic
to his mother’s milk and told her to stop breastfeeding. Then, not
long after he received a round of standard infant vaccinations, his
scalp was bleeding and covered with green goop , recalled the fi rst-
time mother, who was then in her late teens. She took him to the
hospital emergency room, where, again, caregivers seemed puzzled
by the baby’s bizarre symptoms, which didn’t make any sense until
physicians, fi nally, ordered the right blood test.
What they learned was that Omarion was born with a rare ge-
netic disorder called X-linked severe combined immunodefi cien-
cy (SCID), better known as the “bubble boy disease.” Caused by a
mutated gene on the X chromosome, and almost always limited to
males, a baby born with X-linked SCID, or SCID-X1, lacks a working
immune system (hence the unusual reaction to vaccination). The
“bubble boy” name is a reference to David Vetter, a Texas child born
with SCID-X1 in 1971, who lived in a plastic bubble and ventured out
in a NASA-designed suit. He died at 12, but his highly publicized life
inspired a 1976 TV movie starring John Travolta.
Today, technological advances in hospitals provide a kind of
bubble, protecting SCID-X1 patients with controlled circulation of
fi ltered air. Such safeguards are necessary because a patient ex-MEDICAL RESEARCHERS
DEVELOP A GENE THERAPY
THAT IS SAVING YOUNG
PEOPLE AFFLICTED BY A RARE
BUT DEADLY DISEASEFINDING
A WAY
WITH DNA
by JESSICA RAVITZ
photograph by JOHN DAVID PITTMAN