OKLAHOMA CITY - He's an Oklahoma boy who inspired a newborn screening test that all babies who are delivered in Oklahoma hospitals receive.
Six-year-old Jaxon London, from Eagletown, Oklahoma, is busy jumping cars from a toy ramp, stalling before he receives an immune-boosting IV treatment.
He's comfortable at Jimmy Everest Cancer Clinic because after all, he was born at OU's transplant unit!
"The nurses started taking care of him from day one," explained JEC nurse practitioner Rachel Posey. "It was eight to nine months before he went home. We saw him everyday."
"The bubble boy disease is how I explain it to everybody," said Jaxon's mother, Baranda London.
Baranda is used to having to explain a lot when people see Jaxon, such as why he looks so much younger than six, and why his hair has distinctive bleached blonde spots.
She laughs, "No, I didn't dye his hair, I thought about getting a t-shirt made honestly."
The real explanation is that Jaxon was born without an immune system. It's called SCIDS - severe combined immunodeficiency.
The rare condition was made famous in that 70's movie Baranda mentioned starring John Travolta. The real bubble boy was a child who grew up in a sterile atmosphere. NASA even designed a space suit to prevent him from being exposed to germs and viruses, although he ultimately passed away from the effects of a virus at age twelve.
"We were very fortunate," says transplant doctor David Crawford. "We learned of Jaxon's disease prior to his birth."
Jaxon's cousin died from SCIDS as an infant while Jaxon was still unborn. Baranda was tested while pregnant to see if Jaxon also carried the rare genetic condition that strips him of an immune system.
The London's decided to deliver Jaxon in a neonatal intensive care unit, and he was later transferred to the transplant unit where a sterile environment is carefully maintained.
"We were able to allow him to avoid all the types of pathogens that might have otherwise killed him," Dr. Crawford explained.
Eventually, Jaxon was given a bone marrow transplant, giving him an immune system. However, as often happens with SCIDS patients, the transplant was only partially effective. Jaxon contracted a virus that gives him a chronic digestive problem, stunting his development.
"So the patients have a hole in their immune system even after the transplant" Dr Crawford said.
The donor immune system also attacked his body's ability to make pigment, leading to the light spots in his hair.
"I still keep him safe. That's all I've ever known, to watch over him and keep sick people away from him," said Baranda.
Jaxon's next step may be to undergo a new treatment where his bone marrow is genetically modified and reintroduced into his body to hopefully create a fully functioning immune system. He'll undergo that procedure in California if Medicaid or donations can pay the expensive medical cost.
"We've come to really treasure him and his family and to see him grow and do well, despite an otherwise lethal disease, has been a real joy for us," said Dr. Crawford.
His family has been enveloped in the care and concern of the staff at Jimmy Everest Cancer Center since his birth. Everyone is rooting for Jaxon to keep laughing, playing, and loving life.
If you'd like to help children like Jaxon fight their medical battles, consider donating to JECFriends.org.
Kids with Courage is sponsored by the Jimmy Everest Center.