Article via Journal & Courier here.
Conner’s website here.

Road to curing Conner leads to upcoming transplant
By DOROTHY SCHNEIDER
It was just a common cold that landed Conner Smith in the hospital about 3 1/2 years ago.
But his body couldn’t fight off the germs. Doctors soon discovered the Lafayette boy had an immune deficiency, but it wasn’t until last fall that they diagnosed Conner with a rare disorder called NEMO — Nuclear Factor Kappa B Essential Modifier Deficiency — for which the only cure is a bone marrow transplant.
Conner, now 13, was admitted Saturday to Cincinnati Children’s Hospital and is scheduled to undergo the transplant next week.
The procedure is risky, but it’s Conner’s only chance to return to life as a normal kid. Kristen Smith, Conner’s mother, said the gift the anonymous bone marrow donor is giving their family is priceless.
“How do you say thank you for something like that?” she said.
The road to the transplant has been a long one for Conner; his parents, Kristen and Chris; his fraternal triplet brothers, Evan and Hayden; and his 11-year-old sister, Kelsey.
Because Conner’s condition makes him susceptible to developing a life-threatening infection at any time, he’s spent the past few years getting intravenous doses of antibodies every three weeks.
The treatments were painful, didn’t always go smoothly and left Conner “grumpy and tired,” according to Evan.
When the family decided to pursue a bone marrow transplant as a potential cure, the donor search had to start outside their family. Genetic testing revealed that both Kristen and Chris were carriers of immune deficiency disorders, which now their children are carrying.
A local bone marrow registry drive and a national search turned up several donors, each matching seven of the eight criteria for Conner’s marrow.
“All of us feel blessed at the way that everyone has reached out to our family,” Kristen said of the community support system that’s sprouted around them during the past several years.
“It has definitely made our family closer. I think, gosh, if we can get through this we can get through anything.”
With the transplant finally scheduled, the Smiths had to prepare for the long haul. Conner will have to stay close to the Cincinnati hospital for the first 100 days after the procedure, and his mother and father will be the only visitors allowed to see him because of the risk of infection in the early stages.
Conner said he knows the transplant “won’t be the easiest thing in the world” and admits he’s sometimes nervous. Conner planned to have his siblings shave his head before going into the hospital, because the chemotherapy he’ll need for the transplant will make him lose his hair anyway.
Chris said he’s planning to take on the daunting transplant procedure with a day-by-day attitude.
“I view it pretty much like when we brought newborn triplets home. I’m going to get through tomorrow and then get through the next day,” he said.
“Hopefully, like raising triplets, the days are long but the months are short.”