Fighting for Lorena

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Diego holds Lorena and Mirella totes newborn son Jose Augusto. — Photo by Susie Safford

In the bedroom of their small Edgartown apartment, Mirella and Diego Mendes sit on the bed, caring for their two small children. Ms. Mendes, 24, soothes and cuddles their tiny new son, Jose Augusto, born on Nov. 13.

Across the bed, Mr. Mendes, 29, holds 19-month-old Lorena across his lap. Looking like a delicate, pretty doll in her pink and white outfit, big pink bow in her short black hair, dark eyes fringed with long lashes, the little girl lies quiet and unmoving in her father’s embrace. A strong-looking young man with muscled arms, Mr. Mendes holds the child gently, watching her face with close attention.

“I have my daughter here, I don’t need any more,” he says in clear, passionate English, although he usually speaks only Portuguese. “I don’t have a car, house, money. It’s more important to have my daughter.”

This could be an idyllic scene, a happy family portrait. But all is not well. These young parents are struggling with challenges far beyond their abilities to handle, and must rely on community help to get them through the difficult days and weeks ahead.

Friends are rallying around them, lending a hand, bringing meals. But this is far from enough to fill their practical needs. And nothing but a miracle can soothe the ache in their hearts.

Lorena does not have long to live. She is the victim of an extremely rare genetic abnormality with wide-ranging destructive effects. It impacts her liver, heart, brain, spleen, and muscle tone. She cannot move normally or hold her head up. Although her eyes are bright and lively, the child cannot see.

Since the diagnosis less than two months after her birth, Lorena’s condition has deteriorated. An allergic reaction to medication made it worse. Recently she developed apnea, and often stops breathing. She is connected to a monitor; her father must administer emergency CPR to revive her when her breath falters. Doctors have told the family that Lorena’s health will not improve, that she will never have a normal life, and that she is unlikely to live beyond 2 years old.

By contrast, their baby son is the picture of health. He nurses enthusiastically, squirms and kicks, lets out a robust yell.

“He is a miracle, this one,” says Meirelucea Nunes, a good friend who often helps. The couple told their story through Ms. Nunes and her son, Heyttor, 9, who shared interpreting duties.

Even after receiving the bleak news about Lorena, the couple maintained a fairly regular life. Mr. Mendes worked; his wife cared for Lorena. And eventually there was a new baby on the way.

But now regular daily routines beyond childcare have fallen away. In late pregnancy, Ms. Mendes dislocated her hip while attending to Lorena, and had to go on bed rest. Lorena’s breathing problems increased, requiring constant surveillance and frequent CPR. Mr. Mendes left work to take over Lorena’s care.

Ms. Mendes had stopped working during her first pregnancy due to extreme nausea, and could not start again because of Lorena’s needs. With both out of work, there is no income.

Mirella and Diego Mendes had been married three years when they moved to the Vineyard from Salto de Pirapora, São Paulo, Brazil, in 2012 after a friend here encouraged them to come. Although there was a strong Brazilian community on the Island to welcome and support them, they left parents and large, close-knit families behind.

Mr. Mendes got a carpentry job, and cooked at the Ocean View evenings. His wife worked at the same restaurant, and cleaned houses.

Although Ms. Mendes had difficulties while expecting Lorena, the pregnancy was otherwise uneventful, delivery normal, and the infant girl appeared healthy.

“We were given a gift from God with the birth of our beautiful baby girl, Lorena,” the parents said on the GoFundMe website.

But six weeks later, ominous problems arose. The baby developed a fever, and blue spots appeared on her body. When the conditions persisted, mother and child were taken by ambulance to Massachusetts General Hospital. Doctors found Lorena was infected with cytomegalovirus (CMV), a not terribly uncommon condition, and administered medicine. But further grueling tests on the infant and parents during many subsequent visits to the Boston hospital revealed a devastating situation.

“Every day they found a new problem,” Mirella Mendes recalls sadly.

Lorena was diagnosed with GM1 gangliosidosis, a disease that destroys nerve cells in the brain and spinal cord. Each parent had a mutant gene, not a serious problem when someone has a single one. But Lorena had inherited two such genes, an extraordinary and deadly combination. Although medications were prescribed to keep Lorena comfortable, there is no cure. Nothing more could be done.

Because her immune system is weakened, Lorena cannot be taken to the hospital or doctor’s office. Her pediatrician, Dr. Melanie Miller, makes home visits to monitor her condition, for which the parents are deeply grateful.

Learning of Lorena’s illness, Ms. Mendes was scared about losing her daughter and felt great pain in her heart. But although she understands the severity of the problem, she holds out hope.

“She believes in God, that God can change the situation,” translates Ms. Nunes. “God gave a life, but can take a life if he wants. Every day she believes God can heal Lorena. They still believe.”

When Ms. Mendes, a tall, extremely slender woman with large, thoughtful eyes, returns her son to his bassinet, she moves haltingly because her hip hurts. The parents seldom leave this room to go downstairs or outside. Lorena cannot be left alone; walking is painful for her mother.

Mr. and Ms. Mendes, although visibly fatigued, seem strikingly serene despite their tribulations. They speak gently and affectionately to each other, share a smile from time to time, and lavish loving attention on the baby and Lorena. They are doing all they can do now — take care of their children, one day at a time.

Even in the face of heartbreaking difficulties, they chuckle to recall bright moments in the past when Lorena could still respond. Her daily bath made her happy, and she loved it when her father played and sang Brazilian country songs. Videos show her singing and laughing with the music, reaching for a toy.

They call Lorena “our little fighter” for all she has endured.

Throughout the two-hour interview, Mr. Mendes holds Lorena, responding to her movements, shifting her position, raising her head when she becomes congested. This continues day and night. She cannot be left by herself, and must be fed every two hours.

How did he learn to take such good care of his daughter?

“His whole life he’s been dreaming about being a dad,” explains Heyytor.

Asked what tops their wish list, the parents respond without hesitation: a miraculous recovery, a long and normal life for their beloved Lorena. They yearn to travel to Brazil so their many relatives could meet Lorena. But even if they had the money to make the trip, they would not dare risk Lorena’s fragile health with travel, nor take her away from good medical care here.

Their third wish would be to bring all those family members here to meet their daughter, something far beyond their financial ability.

Such dreams aside, the family has countless needs — money for their hefty rent, utilities, medicine, food, ingredients for Lorena’s special formula. They must get baby clothes, supplies, and gear for Jose Augusto. A comfortable reclining chair would enable Diego Mendes to hold his daughter with less discomfort.

They rely on only food stamps and friends who occasionally bring meals. Sophia’s One-Stop Mart in Edgartown provides takeout dishes. During the interview, their friend Nelly Peters bustles in the kitchen, preparing a simple supper.

Friends created a GoFundMe page that has raised some $4,000. Collection boxes have been placed in Brazilian businesses and churches. Ms. Nunes hopes that more Island neighbors will be moved to help when they learn of Lorena’s and her family’s plight.

To donate funds or supplies to help the Mendes family, visit gofundme.com or call Meirelucea Nunes, 508-692-1224.