published Wednesday, January 22nd, 2014

3-year-old succumbs to rare disease; candlelight vigil set for tonight in Sweetwater, TN

Tre Johnson, left, and his brother Bryson from Sweetwater, Tenn., play in the kids courtyard at Erlanger Hospital in Chattanooga.
Tre Johnson, left, and his brother Bryson from Sweetwater, Tenn., play in the kids courtyard at Erlanger Hospital in Chattanooga.
Photo by Doug Strickland /Chattanooga Times Free Press.

Tré Johnson fought through his third birthday. He fought through Christmas, and into the New Year.

The Sweetwater, Tenn., toddler fought hard for life as he underwent a grueling bone marrow transplant process and isolation in an Ohio hospital.

But on Saturday, his fight ended.

Tré and his little brother, Bryson — just one year younger — gained local attention after being diagnosed with a life-threatening genetic disease called IPEX syndrome, which is so rare most doctors are unfamiliar with it.

The disease affects the immune system of male babies very early in life. Multiple autoimmune disorders develop in the body, leading immune systems to malfunction and attack their own tissues and organs.

Doctors at Cincinnati Children’s Hospital Medical Center, known for its work with genetic disease, were able to find a bone marrow match for Tré and performed the surgery in September. But the 3-year-old died last week from complications with the process, his grandmother Melissa Latham said.

“Oh my goodness, that little baby fought so hard,” Latham said. “He had so much light, so much life.”

There are fewer than 200 known cases of IPEX syndrome in the world. The only known cure for the disease is the transplant; its cure rate is 80 percent.

The little boy’s death also calls into question what kind of treatment the family will take with Bryson, who still suffers from the disease.

Latham said she doubted the family would return to the hospital in Cincinnati to try the same treatment for Bryson.

“It’s still too early, and it’s still too hard after what has happened to really think about it at this point,” Latham said.

For now, they plan to manage the disease’s symptoms at T.C. Thompson Children’s Hospital at Erlanger, where the boys have been treated for the last year.

A candlelight vigil will be held in memory of Tré Johnson in downtown Sweetwater at Engleman Park tonight at 6:30.

“He was the most precious boy,” Latham said. “People who came into his life knew that well.”

Contact staff writer Kate Harrison at kharrison@times freepress.com or 423-757-6673.

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