Kidney for Roman: One Teenager’s Lifelong Journey

Roman McCormick was born with branchiootorenal/branchiootic syndrome, also known as BOR/BO syndrome. BOR/BO syndrome is a rare genetic condition that can affect the growth and development of the neck (branchio-), ears (oto-), and kidneys (renal)—although people with the branchiootic (BO) expression of the syndrome don’t have developmental differences in their kidneys. The way the condition presents itself varies widely from person to person, even among family members. This can make it hard for doctors to diagnose the syndrome or fully diagnose how it manifests.

Roman was treated for symptoms throughout infancy and he received his full diagnosis at 11 months old. His parents, Jamie and Dan, were told that the syndrome was hereditary, and they later found out that Dan had it himself. His own symptoms mostly affected his ability to hear.

Despite his rough start in life, Roman’s parents tried their best to give him a typical childhood. They fostered Roman’s passion for soccer, which he played until 7^th grade. Then he became interested in competitive gaming and joined his high school’s Esports after-school program. All the while, Roman managed his condition through lifestyle habits and medication. His doctors expected that he would need a new kidney before age 10, but he made it all the way to high school before they recommended a kidney transplant.

Roman’s family started putting his story in the local media in the hopes that it would help them find a living donor. Someone read a news article that featured them and contacted Brian Martindale, the founder of Kidneys for Kids, an organization that advocates for children with kidney disease. Brian reached out to 13ABC, a news station in Toledo. 13ABC agreed to do a feature segment on Roman and his journey to help spread the word, in collaboration with Kidneys for Kids and NKF.

At this time, Roman doesn’t need dialysis, and his bloodwork is checked every month to monitor his kidney health. But Roman is currently looking for a suitable living donor. Dan, who is himself a kidney recipient, created a website for Roman so that anyone who is interested in Roman’s journey can contact the family or find out how to get tested to see if they would be a match.

• To learn more about living kidney donation, visit this link.
• To learn more about children and kidney disease, visit this link. 
• If you are interested in connecting with Roman and his family with interest, please contact the NKF or visit his website listed above.