Masha awaits double lung transplant

Tiny Masha Benitez looks as if she could be swallowed up whole by some of the larger dogs at Kennedy Park in Long Beach on a breezy, sunny Sunday morning.

But Masha, a 17-year-old Long Beach High School student who weighs all of 80 pounds and stands 4’ 9”, seems to posses a mystical relationship with the canine set.

“Sit,” she tells Buckey, a mini-Aussie doodle, and the dog politely follows orders, after repeatedly standing on his hind legs to paw strangers.

Masha would appear to be another volunteer at the dog training sessions held at Kennedy each Sunday and organized several years ago by Marty Aynat.

But Masha and her parents, Michelle Quigley and Luis “Tony” Benitez, say she has only a year to live – unless she receives a double lung transplant. 

Masha suffers from pulmonary veno-occlusive disease (PVOD), a rare form of pulmonary hypertension caused by progressive blockage of the small veins in the lung. Her prognosis is not the best. She may also need heart surgery, and the lungs she needs to receive must be compatible with her size and blood type.

How does Masha, a lively girl with a brilliant smile and a flow of blonde hair, feel about her medical situation?

“I wish there was a magic wand that you could wave and it would say, You’re fixed,” she said in a Starbucks near Kennedy Park after she huddled with some dogs. “I have less than a year to live” without the surgery, she said.

On Monday, Masha celebrated her 17th birthday at the high school, where students held a rally in her honor, replete with balloons and best wishes from classmates.

On Tuesday, Masha and her parents traveled to Children’s Hospital of Philadelphia, where they signed the consent forms for her surgery and have her named placed on a waiting list. 

But her parents face a devastating dilemma:

“Someone needs to lose a child for me to save my child,” her father said softly, as Masha listened intently.

What gets him through all this? “You have to take it day by day,” said Benitez, a large man with soft dark eyes who is dean at a special education high school in Brooklyn.

Masha was born in Russia to a mother who quickly turned her over to an orphanage. “She never knew her (birth) mother,” her father said. She was born with fetal alcohol syndrome, had breathing problems at the orphanage, and was sent to a Cohen Children’s Medical Center in New Hyde Park for heart surgery at the age of 3.

Her trip was paid for by the Gift of Life Inc., started in 1975 by a Rotary Club in Brooklyn that helps needy children who require corrective heart surgery. Masha said she was mistreated at the orphanage, taunted because she was unable to speak clearly due to her hearing problems, and was even struck by frustrated staff members.

The Long Beach couple first met Masha at the Ronald McDonald House at Cohen Medical Center, and decided, almost immediately, to adopt her. The process took about 2 ½ years as the Russian government tried to prevent Americans from adopting Russian children, under an order by President Vladimir Putin.

But Quigley and Benitez persisted, and brought Masha home when she was 5. They also have a 16-year-old son, Giancarlo. 

Masha’s health deteriorated over the years. Her hearing was poor, and her breathing was labored. In February 2019, she was diagnosed with severe PVOD.

“The doctors took an angiogram of her lungs,” last February, said Quigley. “Healthy lungs look like tree branches. Hers looked like a dead trunk.”

Masha loves to swim, but has been unable to, because of her health. She loves dogs, and has a corgi named Lulu, who dotes on her. She comes to Kennedy Park every Sunday, where she gives commands, and love, to big and small dogs in need of free training. 

“She is awesome at it,” said Aynat. “Just watch her.”

“It’s therapeutic,” said Masha, as she handled Chloe, a cockapoo. “It makes me feel good to help other dogs.” 

Masha is also adept at raising money for others. This year, she has raised $18,000 for the Make-A-Wish foundation.

Jody Bernstein of Lido Beach has started a GoFundMe campaign for Masha. Bernstein’s son, Tyler, 15, is a friend of Masha’s. Last year, Tyler needed a heart transplant, and neighbors and friends rallied for him. “I wanted to pay it forward,” said Bernstein. 

But Benitez, while thankful for the support, said insurance will cover most of the cost of Masha’s surgery and recovery. He said any money raised will be used to help Masha in the future.

Benitez and Quigley said their prime concern is making people aware of the need to consider organ donations.

“It’s not necessarily about money,” Benitez said. “We want to get the word out that people should make a donation” and indicate so their drivers’ license.

As the surgery draws near, Masha said, “I’m going to be anxious. But I’ll put on a smile and hope for good things to come for me.”

Masha rarely ever lacks for things to do. Next week, her godfather is taking her for a trip to Cancun, in Mexico.

“She likes rice and beans,” her father said.