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11-year-old dancer receives kidney from brother
Born with rare genetic condition called BOR syndrome, Barbie-loving Emily Alanko returned to Cohen to thank her doctors by performing an original dance number
Emily Alanko, 11, of Commack, who loves dancing and everything Barbie, proved that she is back on the dance floor once again after undergoing kidney transplant surgery at Cohen Children’s Medical Center (Cohen). The organ was donated by her big brother, Daniel Alanko, MD.
Emily, joined by her mother, father and life-saving brother, returned to Cohen, part of Northwell Health, to thank the two doctors who have been monitoring her health condition since birth. Emily showed her thanks by performing a live Barbie-themed dance that was choreographed by Linda Castro, the girl’s life-long dance instructor.
Christine Sethna, MD, director of pediatric nephrology at Cohen, has been treating the talented young lady since she was born.
“Emily was born with a genetic syndrome called Branchio-OtoRenal (BOR) Syndrome, a rare genetic disorder,” said Dr. Sethna. “In Emily’s case, she was born with just one kidney that wasn’t functioning properly. It was also discovered at birth that she was born hard of hearing.”
What is BOR syndrome?
BOR syndrome is a disease that can result in deformations of the kidneys, neck and ears. The condition is inherited at birth; children born to parents with BOR syndrome are likelier to develop it themselves.
Hearing aids can improve hearing impairment associated with BOR syndrome. Patients with kidney dysfunction may need dialysis or surgical interventions, such as a kidney transplant.
Pamela Singer, MD, medical director of the pediatric kidney transplant program, added that Emily’s situation was made that much better because of a loving family who supported her during surgery and recovery.
Zara’s story: No more dialysis
Born with chronic kidney disease, Zara required dialysis every day for two years. Once a donor kidney match was found, the nationally recognized experts at Cohen Children’s Medical Center performed a successful transplant. Now, Zara is a healthy, happy 2 year-old who loves to dance.
“BOR is a very rare disorder,” said Dr. Singer, “maybe one in 40,000 babies worldwide are born with this disorder. And here we have Emily who faces the world with so much energy and hope. She is an inspiration for all of us.”
Prior to the transplant that took place on February 6 of this year, Emily’s family noticed that she was becoming increasingly tired and forgetful. Her mother, Monica Resendez, noted that she would come home from school at 3:45 p.m. and just go to bed.
“We saw a very bright student, who used to score straight As, coming back from a test and barely passing,” said her father, Steven Alanko. “It was clear that we would have to seriously face the possibility of transplant in the near future."
So, on February 5, Emily’s brother, Dr. Alanko, himself a pediatric emergency room physician, selflessly donated a kidney to his little sister.
Introducing himself as “Emily’s brother and kidney donor,” Dr. Alanko explained that the testing process to become a donor was long and difficult. Prior to transplant, he met with doctors, psychiatrists and social workers — a team effort to ensure that he was fully prepared to make this commitment.
“I’m here today to emphasize once again that we can all live with one healthy kidney,” he said. “And, to be honest, if it had turned out that I wasn’t a match for Emily, I would have been very disappointed. I’ve added decades to her life — with no sacrifice to my own. This is one of the few times in life that you know you were put on earth for a reason.”
Before assuming her position in the pink box, Emily noted that even though “medicine is gross,” she wanted to thank her doctors and her brother, who she says is her hero. Sporting pink and purple glittery hearing aids and dressed in a hot pink dance costume, Emily performed an original number called “Dance the Night” with the poise and theatricality of a Broadway star.
To quote Emily (and Barbie): “What makes you different makes you special.”
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