Texas born baby without skin. Doctors are looking for answers

"It was just completely silent," his mother told News 4 San Antonio on the occasion of the baby's birth. "You expect people to be happy after having a baby and I did not know until they put me in a room and explain what was happening." J & # I was confused, lost, I did not know what was going to happen. "

Doctors at the San Antonio Methodist Hospital initially diagnosed the baby with aplasia, a rare skin condition causing the birth of a skinless person, reported the San Antonio Express-News.

Rare and incurable disease

Last week, the baby, now 3 months old, was transferred to Texas Children's Hospital in Houston, where specialists told the family that Ja'bari may be suffering from epidermolysis bullosa.

Epidermolysis bullosa is a rare and incurable genetic disease that causes blisters on the skin, but can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth. The disease affects 20 newborns in 1 million live births in the United States.

Parents, who also have children aged 5 and 6, undergo genetic testing because most forms of epidermolysis bullosa are hereditary, reported the San Antonio Express-News.

The baby, who now weighs 8 pounds, must be nurtured by a probe in the nose and needs frequent dressing changes and pain medication.

His parents both work at Taco Cabana and have created a GoFundMe page. His mother wrote on his son's page: "Every day he fights to live on this earth."

She can not comfort him in the usual way of mothers.

"I was able to hold it twice, but you have to wear a dress and wear gloves," she says. "It's not skin-to-skin, it's not the same."

& # 39; they will not give up & # 39;