Thursday , January 21 2021

Baby born without skin, subjected to treatment that can save his life – National

Ja Barry Gray was born on January 1 with most of his skin missing, and he has not left the hospital ever since.

Doctors at a children's hospital in Texas, Houston, where he was transferred on Friday, have been diagnosed with epidermolysis bullets, a rarely genetic disorder of the connective tissue that leaves the skin susceptible to blisters and tears of the slightest trauma.

His mother, Priscilla Maldonado, has since started GoFundMe to help with large (and unexpected) medical costs.

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"All the while I was pregnant, everything was fine … then ultrasound showed that it did not get weight, so they decided to induce me 37 weeks," said Maldonado.

The doctors took Maldonado into an emergency C-section. When Jabari arrived, he only weighed three pounds, missing large parts of the skin, and his eyes were closed.

"The skin disorder that has it is so rare that it does not [doctor] I've seen it so far and it's very difficult to heal, "Maldonado said.

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The bar has some skin on the head and legs, but no one is on his hands or torso.

He is currently seeking a breathing machine, and he is being treated with fat and is often changing dressings to prevent infection, Maldonado said.

Maldonado has only twice that he can hold it.

"You need to be dressed in a cloak and tilt," she said. "It's not skin skin, it's not the same."

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Doctors are not positive that the condition is bullous epidermolysis, but that disease is inherited, so Maldonado and her husband are undergoing genetic testing to confirm the diagnosis.

"They are really focused on keeping it comfortable right now," Maldonado told the Associated Press.

"It can be two to three weeks before they have an answer. They do not want to treat my son for the wrong thing."

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Maldonado and her husband have two other children, aged five and six, who are staying with Maldonado's mother, while the couple are staying with Yajari at the hospital.

"It's hard to go just to worry about the health of Yari and that [hoping] he [doesn’t] have another event [stopped] breathing, "said Maldonado." A total toll is taken for all of us. "

Doctors are in the process of creating a Gary Bar treatment plan, but they hope to perform a surgery to reduce scar tissue that connects Yari's beard with his breasts.

Read more: Home births vs. hospital births: What you need to know about both

Maldonado says doctors do not know how long Jabari will need to stay in hospital.

"Even if he withdraws, we do not know what the future is," Maldonado said.

"Every day is a blessing that he is still struggling to live on this country, and the donation big or small will be such a blessing."

– With files from the Associated Press

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© 2019 Global News, a division of Corus Entertainment Inc.

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