Cherokee County Boy Looking For Transplant Due To Rare Kidney Disease

Sunday, February 9th 2020, 2:30 pm
By: Amelia Mugavero

Nine-year-old Dakota Roe seems like any other kid his age. He loves Spiderman and running around.

Dakota's mom, Cara Amos, said his heart's as big as his smile. Dakota has been living with a failing kidney since birth.

“It started when he was 11 months. He wasn’t growing," Amos said. "The doctors ran a bunch of tests, admitted him to the hospital, and their tests came back as cystinosis."

Cystinosis is a rare metabolic disease that is attacking Dakota's kidney. She said Dakota is sensitive and gets fatigued quickly.

“I just want to live a normal life. I want to be like other kids," Roe said. 

Dakota's father, Joseph Roe, said the condition is so rare that only 500 people have it in the U.S., and 2,000 people worldwide.

“The best way I can describe it is it's a one in a million chance to get it,” Joseph Roe said. “He sees his other siblings, you know, they get to do a lot more stuff than he does. They don’t have to go to the doctor every month."

Dakota has to take up to 50 pills a day. Amos said if Dakota doesn't get a Type O kidney transplant within the month, doctors will have to put him on dialysis.

However, doctors are concerned Dakota won’t have the strength for dialysis treatment.

“It’s very hard emotionally and physically to make sure he can have a normal life,” Amos said.

The process has been difficult to find the right donor because of the strict criteria.

The donor must have the “O” blood type (either negative or positive), be healthy, a non-smoker, and must be an adult less than 50 years of age.

“We just want him to have a new kidney so he can be happy and healthy,” Amos said with tears in her eyes.

Amos said the transplant is paid for by their insurance and the transplant team, so the donor would not have to pay for anything.

She added the donor would be out of commission for about two weeks with no heavy lifting for six weeks. After the transplant, Dakota would have to stay in Oklahoma City for at least three months. One of those months would be in the hospital.

Dakota said he wants to grow up to become a police chief and make people smile. He hopes someone will be his superhero and help. 

When asked Dakota how he would feel if he got a new kidney: “Happy,” he said. “They would be my superman.”

If you wish to donate a kidney to Dakota, you can call Lesli Summerhill, a living donor coordinator with the Oklahoma Transplant Center at the University of Oklahoma Medical Center at 405-271-7498.

If you want to help Dakota financially, there is a GoFundMe page to pay for Dakota’s treatment after he receives a transplant. 

Also, Chickashaw based company “Wing T’s” are providing shirts designed by Dakota. All proceeds go towards his treatment. 


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