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Like most children, 8-year-old Jarrod Danka prays for his family and friends before going to sleep every night. But unlike most children, Jarrod’s prayers include one special request—a new kidney.
Doctors knew Jarrod and his twin sister Devin had kidney trouble before they were born while performing a routine ultra sound.
“There were shadows on the kids’ kidneys in utero,” Tracey Danka, Jarrod and Devin’s mother, said. “Upon their delivery, they were checked out and sent to Children’s Hospital (Pittsburgh).”
At only four days old, doctors discovered Jarrod’s kidneys were performing at a 27 percent function rate and Devin’s in the high 60 percentile.
Jarrod was eventually diagnosed with multicystic dysplasia of the kidney (MCDK), where cysts form in the kidney and interfere with the organ’s function. Jarrod’s kidneys currently function at a 20.25 percent rate. He takes eight doses of medication every day and sees doctors regularly every several months.
Devin was born with the same condition, but one of her kidneys became so infested with cysts, the body eventually absorbed the kidney and passed it. She is now diagnosed with polycystic kidney disease.
“We’ve never kept their kidney disease a secret from them,” Danka said. “We’ve always told them, ‘This is the path that God chose for us. We have kidney disease. There’s a reason for this.’”
Danka, who endures the same condition as daughter Devin, knew firsthand what hardships faced her young children. She and her husband, Edward, knew both children would eventually need transplants, but she was completely caught off guard when at a routine check-up on Jan. 19, Jarrod’s doctor confirmed he was transplant ready.
“We’ve always known that Devin and Jarrod were going to have to have transplants,” Danka said. “The surprise was they took that option away from us, the cushion we had of surgery and dialysis.”
Jarrod had already beat the odds. Doctors told Tracey and Edward Danka Jarrod would most likely need a transplant about six months after starting kindergarten, as being around so many other children could worsen his condition. That was three years ago.
The twins’ doctor decided it was in Jarrod’s best interest to have a kidney transplant rather than opt for surgery and dialysis. Most dialysis patients undergo treatments every few days, but in Jarrod’s case, he would have to endure dialysis treatments every night while he slept. The doctor feared it would be too physical straining on his small body.
“I truly believed in my heart that Jarrod would be that miracle child, that he would go forever at 20.25 percent and never need a transplant,” Danka said.
FINDING A DONOR
“Just because your child needs a transplant doesn’t mean they’re going to get one,” Danka explained.
Doctors performed a number of tests and met with several specialists to determine his body was transplant ready. Jarrod’s doctor said to avoid dialysis a transplant needs to take place within the next four to five months.
“What a trooper he is—unbelievable how brave he is,” Danka said. “No one should ever have to go through [the tests], not even your worst enemy.”
Jarrod is ineligible to receive a cadaver kidney due to his two types of kidney disease and therefore cannot be added to a transplant list. Instead, the family must find a live donor willing to donate a kidney. The donor must range in age from 18-60, be in good physical health and not suffer from high blood pressure, diabetes, cancer, kidney or heart disease. The donor must also match Jarrod’s type O blood.
“Negative and positive only matter in blood, not organs,” Danka said. “It doesn’t matter if the donor is a negative or a positive.”
Danka and her husband do not qualify to be a donor for Jarrod. They are in the process of having several family members tested. Three are scheduled to be tested in early March, which is one more than insurance normally pays for. Doctors are testing family members in Pennsylvania first. The donor will need to be in a nearby hospital during the transplant.
If a potential match is found, the donor has to have a biopsy and Jarrod’s body needs to be introduced to the cells to make sure it won’t attack them. If his body accepts the new cells, it will take between six and eight weeks to prepare the donor for surgery, which includes many tests both physical to psychological.
“They have to find out why someone is going to give us this great gift,” Danka said. “It has to be done for the right reasons.”
The transplant surgery will cost between $160,000-$280,000, and the Danka’s insurance will cover 80 percent. But because of the family’s existing insurance policy, they have been turned down for Medicaid Access. Danka said she and her husband have been saving for the twins’ transplants since they were born, but the financial responsibility is always an additional concern.
“If you do not work out a financial agreement with the hospital if and when a kidney becomes available, your child might not be eligible,” Danka said. “This is with every hospital, and that’s the really sad thing. It’s the last thing you should have to worry about—can I afford this to save my child’s life?”
In addition to paying for Jarrod’s costs, the Dankas are aware of the financial burden the donor will have—time off for the surgery and recovery will be necessary.
“There’s only so much your insurance will cover,” Danka said. “Our biggest thing is we would like to be able to help the donor out if possible.”
Jarrod’s transplant surgery will eventually take place at Children’s Hospital, which had a 100 percent success rate based on a three-year survival rate according to its 2006 statistics. So while the Dankas are confident the transplant will be successful, another dark cloud looms in their minds.
At 8 years old, Jarrod’s body is far from growing. Adults who receive transplants are often done growing, and their kidneys are able to function at a normal rate. On a child’s growing body, the organs work much harder.
“Jarrod is nowhere near even getting to puberty yet,” Danka said. “What he’s going to put this kidney through just normal growing, it’s going to take a toll on it.”
Because of this, doctors predict Jarrod will need between four and seven transplants within his lifetime. But Jarrod remains positive about the situation, and is excited to receive his new kidney. He plans to name it, and has considered the name Jarrod Danka’s Kidney—JDK for short.
His positive attitude helps his family remain positive. They have put their faith in God he will take care of Jarrod and Devin.
“We’ve always said that we were blessed. God chose us for this,” Danka said. “God gives you exactly what you can handle, whether you realize it or not. He couldn’t have picked a better person in Jarrod, because he’s just amazing.”
HOW YOU CAN HELP
The family is having a variety of fundraisers and blood drives near Jarrod’s hospital in Pittsburgh, but those wanting to contribute locally can donate to the Jarrod Danka Transplant Fund, accessible at the Horry County State Bank. The family can also be reached at: Edward and Tracey Danka, 430 Maplewood Drive NW, Calabash, NC 28467-1832, or by phone at 579-2143 or (843) 455-0243.