Family, Temperance Knights of Columbus seek kidney for boy, 15, with renal condition

Roman McCormick needs a kidney.

The high school freshman from Toledo has a genetic renal condition that has gotten worse through the years. Today he’s in stage 4 kidney failure and has just 25% kidney function.

Roman, 15, is the son of Jamie Redd and Dan McCormick. His dad is originally from Monroe and is a 17-year member of the Our Lady of Mount Carmel Council 8902, Knights of Columbus in Temperance.

Roman’s family and the Temperance K of C are actively seeking a kidney donor.

Diagnosis and aftermath

Roman was born with branchiootorenal, or BOR, syndrome, a condition passed on from his dad, who also suffers from BOR and has kidney failure. His dad had a kidney transplant last September.

“Roman was born with two divots on the side of his ears. That’s a sign,” Redd said. “He also had an opening in his chest when he was born. He had branchial in his ears and chest.”

At just 6 months old, Roman had surgery to remove the cysts from the sides of his ears and chest.

At first, doctors thought he just had the branchial portion of BOR, but then, during a routine checkup at 12 months, he was diagnosed with BOR syndrome.

“This came with the malformation of his kidneys causing them not to develop correctly,” Roman’s dad said. “Since then, his kidney function has dropped over the years.”

Roman had another surgery at age 4, but no other operations have been needed since then.

Nonetheless, the need for a kidney transplant always loomed.

“His birthdays are bittersweet. We always knew he would need it. They said 10, but we made it there. They said by junior high he’ll need one. Now it’s high school. He will need one before he graduates from high school,” Redd said.

A big need

Roman is currently on the kidney transplant list at the University of Michigan hospital in Ann Arbor.

“He’s on hold on that list because he’s stable enough. We want to see if we can go as long as we can,” Redd said.

A donated kidney has a relatively short lifespan.

A kidney from a deceased donor will typically last 10 to 15 years in the recipient. One from a living donor lasts a bit longer.

“A living kidney can last a little longer, maybe 20 years. They can always last longer than that,” Redd said. “We don’t want to give him a kidney too soon (because then he’ll need another one sooner).”

But, whenever a living donor is found, the family will act fast.

“We would do it as soon as we could,” Redd said. “He’s stage 4. He’s at a point where he’s healthy enough that we don’t have to move tomorrow. But, if we found a donor by summer, we’d push for summer.”

Roman takes three daily medications, but, so far, he has avoided dialysis.

“We are trying to avoid it. If he’s on dialysis, he goes active on the (transplant) list,” Redd said.

As a young child, Roman's activity level wasn't affected much by BOR syndrome.

“He was very active as a child, in soccer, T-ball, baseball,” his mom said.

But that changed a couple of years ago.

“He stopped playing soccer. It was hard on his body to get down the field. It hurt his body and hurt his legs,” Redd said. “Now, he won’t do sports because of the way it makes him feel.”

Instead, he prefers playing video games.

“He wants to be a YouTuber. He has a YouTube channel. It’s him playing his video games,” his mom said.

Around Thanksgiving, Roman received computer equipment, an Oculus headset and a green screen from Make-A-Wish.

Finding a donor

Roman has one biological brother who just turned 18 and has been tested. He doesn’t share Roman’s O-positive blood type.

Other family members and family friends also have been tested, but, so far, no matches have been found.

“Some were denied because of their own health reasons. U-M is very detailed. They don’t tell us how many or who got tested. They don’t want family members to argue. It’s very private. I only know if a person tells me,” Redd said.

To be a donor, a person must be age 18 or older and must have graduated from high school. The ideal candidate would be age 59 or younger, but older people also may donate.

A person can be tested at any hospital, and the results will be sent to U-M. The test is free.

U-M also has a Kidney Pairing Program.

“If you are committed to donating a kidney, they will take it. You would give your kidney to another child in need with your blood type, and their family/friend with Roman’s blood type would give their kidney to Roman,” his dad said.

If someone is a match and opts to have the transplant surgery, there is no cost to the donor.

“Our insurance would cover everything for the donor. The donor is not in the hospital very long, maybe just overnight,” Redd said. “We appreciate anyone who even considers being a donor.”

She said Roman remains positive.

“He’s a smart, loving, caring boy. We call him our little warrior. He’s a trooper. He's gotten his blood drawn almost monthly since the age of 1. He’s a good kid and a straight-A student. He’s in a gifted program,” she said.

To learn more about getting tested and possibly becoming a kidney donor, call the University of Michigan Transplant Center at 734-615-2040.

People who want to help Roman and his family also may contact Our Lady of Mount Carmel Council 8902, Knights of Columbus.

“The council stands ready to assist the McCormicks. If anyone wants to help the family in any way, they can contact me at philbedford@bex.net, and I’ll pass on the information to the family,” Phil Wesley from the Temperance council said.

On the Net: techgeek4hire.wixsite.com/kidney4roman

This article originally appeared on The Monroe News: Family, Temperance Knights of Columbus seek kidney for boy