(Photo credit: GoFundMe)
When Ja’bari Gray was born Jan. 1 weighing 3 pounds, his mother and father were like any other expectant parents, ready to count all the fingers and toes and kiss on the cuddle their new bundle of joy. But Jabari was born with no skin, except on his head and legs. His mother and father, Priscilla Maldonado Gray and Marvin Gray said the pregnancy was progressing normally until 37 weeks. Doctors noticed the baby wasn’t gaining weight and other issues and decided on an emergency cesarean section, Maldonado Gray revealed on a GoFundMe page.
Missing that crucial barrier between his body and the world, the 3-month-old’s mother has been unable to properly hug, snuggle or kiss him.
Doctors in Houston, where the baby was transferred on April 12, are racing to discover the cause of Ja’bari’s condition so they may better treat him. On Tuesday, the baby boy was stable and doing well.
“We want to find an answer right now, but everything is in the air,” said mother Priscilla Maldonado. “They’re just really focused on keeping him comfortable right now.”
“He is requiring a breathing machine that is breathing for him,” writes Maldano on her GoFundMe page. “He has passed away twice and the [doctors] have brought him back. The skin disorder he has is so very rare that no [doctor] has ever seen it before and is very hard to treat with lil’ to no info at all. It has been very hard for us as a family to side with this it’s hard to go to work just worrying about Ja’bari health and hope he doesn’t have another event of stop breathing. It’s taken a complete toll on all of us. Each and every day is a blessing that he is still fighting to live on this Earth. Any donation big or small will be such a blessing to us thank you and keep following his fight.”
To donate to Ja’Bari, click here.
(Photo credit: GoFundMe)
Maldonado, 25, and her husband Marvin Grey, 34, told San Antonio Express News that their son might have something other than Aplasia Cutis, the rare skin condition that medical personnel at Methodist had determined was the cause of his missing skin.
The Houston physicians told her he might be suffering from Epidermolysis bullosa, a rare genetic connective tissue disorder that affects only 20 newborns out of 1 million live births in the U.S.
Epidermolysis bullosa is extremely fragile skin that blisters and tears from minor friction or trauma. There is no cure, but the disease can be managed, with pain medications, infection control and other measures.
To see if this is the cause of Ja’bari’s condition, Maldonado…
Gray and Ja’bari are undergoing genetic testing, because most forms of the illness are inherited.
“It could be two to three weeks before they have an answer,” said Maldonado, who, like her spouse, works at a Taco Cabana in San Antonio. “They don’t want to treat my son for the wrong thing.”
Doctors in Houston are treating Ja’bari, who weighed only three pounds at birth, with pain medication and frequent dressing changes, along with topical ointments to decrease the chance of infection, Maldonado said. He now weighs 8 pounds and is fed through a tube inserted in his nose.
“He’s been in the hospital his whole life,” said Maldonado, who works as a shift leader at the Mexican fast-food restaurant. “I’ve been able to hold him twice, but you have to be dressed in a gown and gloved-up. It’s not skin-to-skin. It’s not the same.”
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