New Castle News

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March 22, 2014

Teen battling kidney disease hopes to help other youths with chronic conditions

(Continued)

NEW CASTLE — CHILDREN’S STAY

The family raced to Children’s, where they learned Grace had Nephrotic Syndrome, a life-threatening illness that  occurs when glomeruli (filters that keep valuable cells and protein in the blood), leak into the urine and the kidneys begin to shut down. In the United States, the disease affects 2.7 per 100,000 people.

Grace was put on steroids, and when she didn’t respond, a biopsy was ordered to determine if she would need a kidney transplant.

“They didn’t even have the words out of their mouths and I jumped up and said, ‘Give her my kidney, test me right away to see if I’m a match,’ ” Patti said, her eyes glistening with tears at the memory. “I would have given anything for her.”

To that point, an overwhelmed Grace had said little, according to Patti.

“I was most scared of the biopsy because I was really afraid of needles back then and I knew it was going to hurt,” Grace said. “I knew how serious it was, I just didn’t want my mom to see that I was scared because I didn’t want to worry her any more than she already was.”

Patti, meanwhile, said she was torn apart inside.

“Grace never said it, but I think she could tell by what was going on around her that she might not make it,” Patti said. “There was really no way to keep it from her with the franticness of the situation surrounding her.”

CHURCH FRIENDS

The Colberts drew strength from their church, New Life Baptist of New Wilmington, during Grace’s 17-day stay at Children’s.

“Our church was of tremendous support to me,” Patti said. “Not a day went by that someone from our church didn’t make the drive to Children’s to sit with us and pray with us.

 “One of the first people I heard from was Nanette Bailey, the wife of our pastor (John Bailey). I found out their daughter (Brooke Tokar), who is in her 30s with five beautiful children, had Nephrotic Syndrome when she was a child and she outgrew it and is healthy and thriving now.

“That meant so much to me, just finding out that there was one person out there who had this disease and had pulled through.”

The Colberts got good news when the results of the biopsy came back, revealing that cells had not been damaged to the point that Grace would need a kidney transplant.

Still, her road has been a rough one. Although drugs put her into remission, she has relapsed often, meaning more trips to the emergency room and admissions to Children’s.

Patti and Bob were taught to test Grace’s urine when she began to show signs of puffiness and the color of the test stick — yellow, green or the dreaded blue — told them if she was in kidney failure.

“We just learned to keep an overnight bag packed,” Patti said. “We never knew when we had to head to the ER or the hospital.

“If she gets an infection, it can go septic and she could die. We cannot take any chances.”

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