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The Long Island 11-year-old from Commack, who loves dancing and all things Barbie, was born with a rare genetic disorder known as Branchio-OtoRenal (BOR) Syndrome, which causes malformations of the ears and kidneys.
In Emily’s case, she was born with just one kidney, meaning a pair of doctors at Cohen Children’s Medical Center has had to monitor her condition since birth.
Alarm bells began to ring earlier this year when her longtime care team, Cohen doctors Christine Sethna and Pamela Singer, were informed that Emily was becoming increasingly tired and forgetful.
“We saw a very bright student, who used to score straight As, coming back from a test and barely passing,” her father, Steven Alanko, told Northwell Health. “It was clear that we would have to seriously face the possibility of transplant in the near future.”
Fortunately for Emily, she wouldn’t have to wait long for her new kidney. On Monday, Feb. 5, her big brother Daniel Alanko, himself a pediatric emergency room doctor, selflessly donated a kidney of his own to his little sister.
Alanko recalled the lengthy testing process he underwent to make sure he was fully prepared for the surgery. He stressed that people can live with one healthy kidney.
“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,” he told Northwell Health.
“This is one of the few times in life that you know you were put on earth for a reason.”
The surgery was a success, and now Emily's back to her old, energetic self, which was abundantly clear during a reunion with Sethna and Singer at Cohen Children’s Medical Center on Tuesday, May 14.
Sporting pink and purple glittery hearing aids and dressed in a hot pink dance costume, she performed a Barbie-inspired choreographed dance number called “Dance the Night” as her doctors, parents, and brother looked on.
“Here we have Emily who faces the world with so much energy and hope,” Singer said. “She is an inspiration for all of us."
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