When Priscilla Maldonado Gray delivered her baby via an emergency C-section on Jan. 1, the room was completely silent. It was supposed to be a joyful and happy moment, but the Texas mother was put in a room to explain what was going on.
Her infant, baby Ja’bari Gray, was born weighing a mere 3 pounds and missing skin everywhere except on his head and legs. His chin fused to his chest. His eyes, his toes, and fingers were also fused together.
Ja’bari needs to be fed through a tube in his nose and needs frequent dressing changes and pain medication. The baby was so fragile he had only been held twice by his mother in three months.
Priscilla said doctors noticed there was something wrong with the pregnancy at around 37 weeks when the baby stopped showing weight gain. Yet, the pregnancy had progressed normally and as expected.
Specialists at Texas Children’s Hospital in Houston told the family that Ja’bari might be suffering from epidermolysis bullosa, a rare, incurable genetic disease that causes blisters on the skin but can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth, according to USA TODAY.
His parents both work at Taco Cabana and have set up a GoFundMe page. His mother wrote on the page of her son, “Each day he is fighting to live on this Earth.”
She isn’t able to comfort him in the usual way mothers do.
“I’ve been able to hold him twice, but you have to be dressed in a gown and gloved-up,” she said. “It’s not skin-to-skin. It’s not the same.”
As if life had not been hard enough, Priscilla and her husband, Marvin Gray, said insurance denied a transfer to The Texas Children’s Hospital in Houston that could save his life. The mother had no choice but file to change her insurance.
Encountering such adversity, the parents thanked the employees at the Houston hospital for giving them hope and would not give up on their son. But above all, Priscilla told USA TODAY, “We have faith, that’s all that matters.”