WHAT’S BEING CLAIMED:
- Three-month-old Ja’bari Grey, who was born without skin on almost every part of his body except for his head and legs, is now reportedly doing well.
- Initially, the baby boy’s lack of skin was determined as a rare skin condition called Aplasia Cutis; however, after further tests by Houston doctors, they said the boy may be stricken with a genetic disorder called Epidermolysis bullosa.
- The condition is incurable but can be managed with medications.
Ja’bari Grey was born without an organ taken for granted by most people – skin. From the day he was born on January 1 at the Methodist Hospital in San Antonio, the 3-month-old’s mother had been unable to snuggle, kiss, or hug him properly.
“Though we want answers right now, everything is in the air. They’re just really focused on keeping him comfortable right now,” said Ja’bari’s mother Priscilla Maldonado.
Except for his head and legs, Ja’bari was born without most of his skin. Since the specialists at Texas Children’s Hospital in Houston are more experienced with rare skin conditions, the child was moved there on April 12. On Tuesday, the baby boy was reported to be doing well.
Later on Monday, the Houston doctors told Maldonado, 25, and her husband Marvin Grey, 34, that instead of Aplasia Cutis, the rare skin condition which was initially determined at Methodist Hospital as the cause of Ja’bari’s missing skin, it is very likely that their boy is suffering from Epidermolysis bullosa. This is a rare genetic disorder involving the connective tissue and only affects 20 newborns out of 1 million U.S. live births.
The main symptom of EB is tremendously sensitive skin that tears and form blisters from minor trauma. Although there is no cure, the condition is manageable with pain medications, infection control, and others.
To make sure if this is what’s causing their boy’s condition, the couple and Ja’bari are undergoing genetic testing since most forms of the illness are genetically derived.
Maldonado also said that an upcoming surgery will involve cutting scar tissue on the boy’s throat that has fused his chin with his chest. Since birth, the baby boy’s eyelids have been fused as well.
Ja’bari, who weighed three pounds at birth, is being treated at Houston with pain medication together with topical ointments to lower risks of infection and frequent dressings. Now, he already weighs 8 pounds and is being fed through a tube.
“He’s been in the hospital his whole life,” said Maldonado, a shift leader at a Mexican fast-food restaurant. She added saying, “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.”
Meanwhile, Taco Cabana has offered to pay for a Houston hotel where the couple is staying while their son receives treatment, and a GoFundMe page has also been set up. Maldonado said her family may have to transfer to Houston.