A Texas couple is desperately hoping to receive some answers after their son was born with an extremely rare skin condition that left even the most qualified of specialists stunned.
On Jan. 1, Priscilla Maldonado Gray and Marvin Gray welcomed their third child, a son named Ja’bari Gray, into the world, San Antonio Express-News reports.
Though the couple initially believed that it would be a normal pregnancy, things quickly turned serious when Ja’bari arrived, weighing only three pounds, and was missing a majority of his skin, aside from his head and legs — a moment that still remains vivid in Priscilla’s mind.
“It was just completely silent,” she told News 4 San Antonio. “You expect people to be happy after you have a baby and I had no idea until they put me in a room and explained what was going on. I was just confused [and] lost. I didn’t know what was going on [or] what was going to happen.”
In addition to lacking part of the body’s largest organ, Priscilla revealed on a GoFundMe campaign that her son’s chin was fused to his chest, while his eyes are fused shut. The 3-month-old’s fingers are also conjoined.
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Ja’bari was initially diagnosed with a rare skin condition called Aplasia Cutis.
According to the Genetic and Rare Diseases Information Center, Aplasia Cutis is when someone is born without skin. Though it most commonly affects the scalp, the condition can affect any part of the body.
Last week, however, the baby was transferred to Texas Children’s Hospital in Houston so experienced specialists could examine Ja’bari and determine how to better tend to his ailments.
While treating Ja’bari — who currently needs to be fed through a tube inserted in his nose and requires frequent dressing changes — with pain medication and topical ointments, doctors began to question the underlying cause of his ailment, San Antonio Express-News reports.
It was then that they concluded Ja’bari, who now weighs 8 lbs., may not have Aplasia Cutis after all, and instead, may suffer from a rare disorder called Epidermolysis bullosa.
The genetic condition, which affects 20 American newborns out of 1 million births, causes the skin to become very fragile and blister easily, according to the U.S. National Library of Medicine.
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In order to determine their theory, doctors are now preparing to perform genetic testing on both Priscilla, 25, and Marvin, 34, as well as Ja’bari — a process which Priscilla said could take some time.
“It could be two to three weeks before they have an answer,” she told San Antonio Express-News. “They don’t want to treat my son for the wrong thing… We want to find an answer right now, but everything is in the air.”
While they wait to see what caused the little boy to be missing the majority of his skin, doctors are planning another surgery that will try to separate his throat and chin from his chest as they are currently fused together because of his scar tissue.
Ja’bari’s condition has also prevented his parents, who both work at San Antonio fast food restaurant Taco Cabana, from having intimate newborn moments like other moms and dads typically do.
“He’s been in the hospital his whole life,” Priscilla told San Antonio Express-News. “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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Now, as Priscilla and Martin prepare to be by their son’s side through his procedure and uncertain future, they are asking for donations on GoFundMe to help with their family’s medical expenses, travel costs, and a possible move to Houston.
Since starting the campaign last month, over $24,000 has been raised for Priscilla, Martin, Ja’bari and their two other children, ages 5 and 6.
“[Ja’bari has] a very long road ahead of him,” Priscilla wrote on the GoFundMe campaign. “Nothing will happen overnight or over a few months, it’s going to be years and years ahead.”
“From day one, they said he had no chance of surviving and I would hate to give up or [for] everybody else to give up on him when he’s made it this far in life,” she added to News 4 San Antonio. “I just want my baby to be home and be normal and [to] be able to hold [him.]”
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