Apr 18, 2019 08:55 AM EDT
Parents Priscilla Maldonado Gray and Marvin Gray welcomed 2019 with a baby boy named Ja'bari Gray. The newborn weighed three pounds, with skin only on his head. Before he was born, the parents and doctors thought that the pregnancy was going well until at 37 weeks, the doctors at the Methodist Hospital in San Antonio had noticed that he was no longer gaining weight. They then decided to have an emergency cesarean section.
He was initially diagnosed with aplasia cutis, a very rare congenital disease that is exhibited by the absence of skin. But over three months, he started to grow some skin on his legs and some other parts of his body. However, his fingers and toes were observed to have fused together. Last Friday, Ja'bari was transferred to Texas Children's Hospital in Houston, the only hospital who agreed to treat him after the parents were advised by San Antonio doctors that there was nothing else that they could do. At the Texas Children's Hospital, he was diagnosed with epidermolysis bullosa, this time a rare genetic disorder that is exhibited by blisters and tears because of extremely fragile skin. With this condition, even very minor friction, such as scratching or rubbing, can cause skin erosions and blistering.
Four physicians are working on Ja'bari's case and they are planning to first perform surgery to open his airway. That way, the doctors can remove him from life support so that he can breathe on his own. "They're going to make an incision on his throat and they're going to be very careful, because there are a lot of veins, nerves, arteries," explains Ja'bari's mother. "So it's going to be a risky procedure, but they're willing to take the chance." After that, the next step is to place skin grafts on the areas of his body where skin has yet to grow.
With the efforts of these doctors to both solve the problem and find out why this has happened, Priscilla has been optimistic and hopeful. "I feel much better," she says. "It's such a relief knowing there's hope." About a month ago, the parents have also setup a GoFundMe campaign for their son; they wrote: "Each and every day is a blessing that he is still fighting to live on this Earth."
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