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Awaiting a rare transplant

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Masha Benitez, a 17-year-old Long Beach girl who needs a double lung transplant to help her survive, has increased her chances of receiving the rare operation: New York-Presbyterian/Columbia University Medical Center has informed her family that she will be placed on a waiting list for the surgery. She is already on the waiting list at Children’s Hospital of Philadelphia.

“There’s one more test they have to do at Columbia, and she’ll be on the list,” Benitez’s mother, Michelle Quigley, said on Sunday. “That’s going to increase her chances of getting the surgery.”

If she does not have the transplant, and possibly a heart transplant as well, her chances of long-term survival are uncertain, she and her family say.

Benitez suffers from pulmonary veno-occlusive disease, also known as PVOD, a rare form of pulmonary hypertension caused by progressive blockage of the small veins in the lungs. What makes her case even more challenging is that the lungs she needs must be compatible with her size and blood type. She is just 4 feet 9 and weighs 90 pounds — up from 80 pounds during the winter, which is a good sign.

A visiting nurse comes to her house twice a week for breathing therapy. She has also been hospitalized twice this summer with lung problems. She remained in the hospital for several days each time.

Benitez, who is supposed to become a junior at Long Beach High School in the fall, is more optimistic now about her chances of survival, with the support of Columbia. “By being on the list of two places,” she said, “the chances are things are going to be fine.”

Meanwhile, she has been spending the summer doing artwork at her home, and she has gone ridden a surfboard with the assistance of the well-known Skudin family. The effort wore her out, she said, and she hasn’t been able to do it as often as she would like.

At the high school last month, students celebrated Benitez’s 17th birthday by waving balloons, at a distance. Returning to school in the fall is a big maybe, said her mother, who worries about the spread of Covid-19, but at the same time wants Masha to live as normal a life as possible. She is extremely delicate, however. Her family is now worried because a friend of a friend of hers tested positive for virus, and Benitez was scheduled to be tested.

When her surgery might take place remains a huge unknown. Her father, Luis “Tony” Benitez, a dean at a special-education school in Brooklyn, has lamented that his daughter’s survival may depend on the death of another child.

Masha, who was adopted by the Benitez family, was born in Russia to a woman who gave her away to an orphanage. She was born with fetal alcohol syndrome, had breathing problems at the orphanage, and was sent from Russia to Cohen Children’s Medical Center, in New Hyde Park, for heart surgery at age 3.

Tony and Michelle met her at the medical center’s Ronald McDonald House, and decided almost immediately to adopt her. The process took about 2½ years, because the Russian government was trying to prevent Americans from adopting Russian children under an order by President Vladimir Putin.

These days Masha is as active a teenager as she can be. When she was stronger, before the coronavirus pandemic began, she helped train dogs on Sundays at Kennedy Plaza outside City Hall. She has had to stop such activity because of the virus.

“It’s OK until it’s not OK,” she said of her condition. “It’s not that OK now.”