DURHAM, N.C. – Thanks to a procedure performed at Duke University, a little boy with a serious illness is on his way to a normal life.
While stem cell transplants using umbilical cord blood are becoming more common, doctors say this one was unique.
Thor Uran is an active 2-year-old boy with a big smile and a habit of blowing kisses. He is already showing brotherly love to his little sister, Lila.
“They’re going to be connected in a very unique way. They literally have the same blood,” said Thor’s mom Justine Uran.
Just weeks after Lila was born, the blood from her umbilical cord was transplanted into her brother, who’s battling a rare genetic disorder called Chronic Granulomatous Disease.
CGD put him at constant risk of infection.
“There are certain bacteria and funguses he can’t fight off,” explained Justine Uran. Her husband, Dustin, added, “He couldn’t play in leaves he couldn’t play in dirt he couldn’t be in fresh water
“Given the type of disease that Thor had, I would not have expected a normal life span for him,” said Dr. Vinod Prasad, with Duke University’s Pediatric Blood and Marrow Transplant Program.
Thor’s best chance for a normal life was a bone marrow transplant, but doctors couldn’t find a match.
So the family, who lives in Minneapolis, looked into using cord blood.
The Urans turned to Duke because of the hospital’s expertise when it comes to cord blood transplants.
Duke performed the first unrelated cord-blood transplant in the world in 1993. But doctors at Duke have only done a handful of transplants like this one.
“This was actually very interesting and almost cutting edge at a number of levels,” said Prasad.
At the time, Justine Uran was pregnant with Lila. Before Lila was born, doctors were able to determine that the baby did not carry CGD and that her cord blood was a match for Thor.
The Urans left their jobs in Minnesota and moved to Durham for Lila’s birth and Thor’s transplant.
First, chemotherapy destroyed Thor’s immune system so he could accept his sister’s cells. The family was in the hospital 42 days.
More than three months after the transplant, Thor is acting like his old self but still waiting for his new immune system to get stronger.
Prasad said cord blood transplants generally cause fewer complications than traditional bone marrow transplants and the match does not need to be as perfect.
“Cord blood units have been used to save now thousands of children with many different diseases including leukemia, lymphoma, immune deficiency, other inherited diseases,” he explained.
The long term outlook for Thor is much different than it used to be.
“He would be very limited without the transplant, but now there aren’t any limitations or there won’t be. He’ll be just like a regular kid,” said the Urans.
Thor has had a couple of setbacks here and needed surgery Tuesday because he developed fluid on his heart, but he’s expected to make a quick recovery.