CHATTANOOGA, Tenn. (AP) — For a long time, the mother's constant frustration was that everyone thought her boys looked just fine. On a recent day, it's easy to see how people could assume that.
Tré Johnson, 2, and Bryson Johnson, 1, careened on tricycles at breakneck speed through the rooftop garden at T.C. Thompson Children's Hospital at Erlanger.
"It's a good day," the boys' pediatrician said to the boys' mother, Jasmine Latham. "They really look great today."
But on many days, Tré can't even crawl out of bed, he's so sick. And Bryson is fighting a siege of infections.
Inside their roly-poly toddler bodies, the two brothers are battling a life-threatening genetic disease so rare that most doctors the family has told about it are completely unfamiliar with it.
There are only 150 to 200 known cases of the disease -- called IPEX syndrome -- in the world.
And two of them are the Johnson brothers.
"The best way I can explain it is that their immune system is doing everything what it shouldn't be doing," said the boys' pediatrician, Dr. Kourtney Santucci. "It is attacking their bodies in harmful ways, and it is not protecting their bodies from infections."
The symptoms of IPEX syndrome include diabetes, thyroid disease, skin conditions, severe diarrhea and anemia, among others. It stunts growth and leaves the boys vulnerable to infections like pneumonia.
The family doesn't have insurance. The boys are on TennCare, but Jasmine, a single mom, has been forced to quit her job to stay with them.
The boys require regular, extensive treatments to keep the infections from the disease at bay. But the only chance for a cure is a bone marrow transplant.
TennCare initially had agreed to cover the genetic testing and treatment at Cincinnati Children's Hospital, but earlier this month, the Lathams received word from TennCare that the transplant was not approved. It would have to be performed in-state -- though no state facilities have a proven track record of caring for children with IPEX.
When Tré was born two years ago, he seemed like a healthy baby boy.
But as the months went by, it grew clear that something was wrong. He was 7 months old and he still acted like a newborn. He slept all day, only waking up to eat. His poop wasn't changing. He wasn't growing.
Doctors said nothing was wrong, so their mother changed doctors. But the problems persisted.
With Bryson, things were bad from the start. He had double pneumonia two weeks after he was born, followed by a kidney infection. His allergies were out of control.
"There wouldn't be a month's time that we weren't at the hospital or in the doctor's office," Jasmine Latham said.
Santucci first met the brothers when Tré was being treated at the hospital for anemia one year ago.
Santucci, a pediatrician at Children's, directs the medically complex care clinic for the hospital -- coordinating treatment and care for kids who have rare or complex illnesses and see a number of doctors.
As care for the boys continued, Santucci began to suspect there were deeper problems than what were on the surface.
"With Tré, it seemed like it wasn't just the anemia. It wasn't just eczema. It wasn't just diarrhea," she explained. "When you added it up, it seemed like an unusual burden of illnesses -- certainly for one child, but then when you looked at them together as brothers, the kinds of things that were going wrong were so similar it started to make sense that there were genetics tying it together."
It was clear the boys had some kind of immune deficiency, but it wasn't clear what it was.
Santucci spearheaded an effort to have TennCare cover genetic testing and treatment at Cincinnati Children's.
In May, Jasmine and her mother, Melissa Latham, got a phone call from Cincinnati. The boys had IPEX.
Doctors at Children's Hospital have formed a team to rally around the boys. The brothers are now on a regimen of treatments and tests to help monitor and manage their condition. They take drugs to help suppress their immune system harmful activity. Their blood is regularly checked.