Due to an extremely rare birth condition, this baby boy has endured unimaginable challenges.

Three-month-old Ja’bari Gray was born on New Year’s Day in San Antonio, Texas, with his eyelids fused together and skin missing from most parts of his body except his head. Doctors at Methodist Children’s Hospital told his parents, Priscilla Mondalo and Marvin Gray, that they could do nothing more.

However, they suffered a further setback when Medicaid insurers denied them a transfer because it was “out of network” in accordance with their policy.

After campaigning and fundraising from family and friends, Ja’bari made it to Texas Children’s Hospital, where he received critical, life-saving care.

Ja’bari Gray, three months old, was born in January in San Antonio, Texas. At birth, Ja’bari Gray had almost no skin below his neck.

Doctors initially diagnosed the baby with aplasia cutis congenita – a condition where there is no skin at birth

Surgeons are now planning to perform a procedure to help open Ja’bari’s airway, followed by skin grafting to cover the underdeveloped areas. Ja’bari’s mother, Mondalo, wrote in a GoFundMe post that she had no complications throughout her pregnancy until week 37 when doctors noticed the baby wasn’t gaining weight.

Ja’bari was diagnosed with aplasia cutis congenita – a condition where there is a lack of skin from birth. These sensitive areas often resemble open wounds and are commonly found on the scalp, but can also appear on the body and limbs.

Aplasia cutis congenita affects approximately 1 in 10,000 newborns. The cause is unknown, but scientists believe it may be genetic.

Faced with Ja’bari’s condition, doctors at Methodist Children’s Hospital said they could do nothing more

However, after examining Ja’bari, a team at Texas Children’s Hospital believes the doctors at Methodist Hospital may have misdiagnosed him.

The research team now believes Ja’bari may have epidermolysis bullosa (EB), a rare genetic condition that causes the skin to become extremely fragile, leading to frequent blistering and wounds that can easily become infected. People with this condition lack type VII collagen – a protein that helps bind the layers of skin together. Even slight movement can cause the skin to separate.

This condition is rare, with only one in 50,000 children in the U.S. diagnosed with it, according to Stanford Children’s Health. Skin grafting has been planned to help cover the underdeveloped areas and carefully separate Ja’bari’s neck from his chest where the skin has fused.

Because it is a genetic condition, Mondalo and her husband, Marvin Gray, 34, are currently undergoing genetic testing. The couple are hoping for some form of treatment for their son, but there is currently no cure.

Ja’bari’s new medical team is currently supporting him with pain management and frequent bandage changes. However, the baby is experiencing complications. Although skin has begun to grow in some areas, Ja’bari’s fingers and toes have fused together during his time in intensive care. Additionally, Ja’bari’s chin is fused to his neck.

A team of specialists met with Ja’bari’s parents on Monday to discuss the procedures they are planning. They intend to make a small incision under the baby’s throat to help remove the tissue causing the neck to fuse to his chest. Once that area has healed, doctors plan to perform skin grafts on Ja’bari’s torso, arms, and legs.