Isaac Barchus suffers from a medical condition so rare, it was only named last year.
On Thursday, 7-year-old Isaac, who has CANDLE syndrome, will travel with his mom, Kathe Barchus, to the National Institutes of Health in Bethesda, Md., and prepare to become the first documented person with his rare medical condition to undergo a stem cell transplant, the Omaha World-Herald reported.
CANDLE syndrome is an autoinflammatory disease that causes the immune system to attack the body’s own tissues. Symptoms include frequent fevers, rashes and arthritis-like joint pain and can begin within weeks after birth.
Isaac is one of nine cases described in medical literature so far, according to Dr. Adam Reinhardt, a pediatric rheumatologist at Children's Hospital & Medical Center in Omaha, who has treated Isaac for three years.
With the stem cell transplant, using stem cells derived from a donor’s blood, doctors hope to stabilize Isaac’s condition until specific drugs are developed to treat it.
"There's a lot we don't know," Reinhardt said. "But in Isaac's case, the transplant is going to be so important for him."
Isaac’s classmates at Sunset Hills Elementary have raised about $3,500 to help the Barchus family with surgical and lodging expenses. The Barchus family will have to stay in Washington, D.C., for approximately four to five months for the treatment.
Reinhardt credits the Barchuses for spreading the word about donor registration and about the disease, which benefits from early treatment.