The parents of Ja'bari Gray, a baby boy born on New Year's Day in San Antonio, have only been able to hold their son twice in three months––because Ja'bari has no skin.
Ja'bari was born with most of his skin missing, except on his head and legs. He was later moved to Texas Children's Hospital in Houston, because the team of specialists there has experience treating rare skin conditions.
Earlier this week, doctors told his parents, Priscilla Maldonado and Marvin Gray, that their son might not have Aplasia Cutis, a rare skin condition that medics in San Antonio had previously determined was the cause of his missing skin.
Specialists are hoping to find answers for an infant born in Texas who had most of his skin missing. https://t.co/9hwlf6fGnY— USA TODAY (@USA TODAY) 1555536601.0
According to The San Antonio Express-News:
"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."
"The hallmark of EB 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. ""They don't want to treat my son for the wrong thing."
Maldonado recalled her son's birth to News 4 San Antonio:
"It was just completely silent. 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, lost. I didn't know what was going on. What what was going to happen."
Ja'bari, in addition to his skin condition, was born with his chin fused to his chest. His eyes, toes and fingers "are also fused shut," according to one report, and he requires surgery to open his airway so he can breathe on his own.
Ja'bari's parents have started a GoFundMe campaign in the hope of covering their son's mounting medical bills:
"Each and every day is a blessing that he is still fighting to live on this Earth , and donation [sic] big or small will be such a blessing to us thank you and keep following his fight."
The campaign has, as of this writing, raised more than $46,000 since it began last month.
Ja'bari almost didn't receive treatment for his condition because Medicaid officials told Maldonado that her insurance wouldn't cover his transfer and treatment in Houston because the hospital was out of network.
This fact prompted many to chime in with support for the child.
This is the cruelty of our health care system. If your care is not profitable, they are not interested in providing… https://t.co/gCLY9YvQMq— Mike Siegel (@Mike Siegel) 1555080323.0
@KFOX14 And this is why we need to do a healthcare reform, by either fixing this system or completely overhaul it to something new— Dereck Guerra (@Dereck Guerra) 1555045271.0
@ArianaLubelliTV @News4SA @KABBFOX29 This is criminal that any #healthinsurance plan would deny coverage! I’d love… https://t.co/dwOivUi2KA— Kristina (@Kristina) 1555074870.0
@ArianaLubelliTV @News4SA @KABBFOX29 Poor baby. Insurance companies are criminal!!— Chelsa Mercado (@Chelsa Mercado) 1555316240.0
San Antonio baby born without skin denied transfer, family says | KFOX Explain to me why the great state of Texas… https://t.co/NWeJQRgWsH— Melissa (@Melissa) 1555071099.0
Medicaid eventually reversed its decision following extensive media coverage.