Houstonians step up to help family of boy receiving treatment for rare disease

An update on a story you saw first on Fox on Friday.

A three-month-old boy born without skin is now at Texas Children’s Hospital getting the care he needs. The family is from San Antonio but Houstonians are wasting no time in making them feel at home.

The parents say before they even got here, Houston was already reaching out to support them in anyway possible.

It’s been a tough journey to get here, but they say their son isn’t giving up, and neither are they.
The mom described what is like seeing him for the first time in Houston.

"He keeps on, and I mean he’s only at 23 percent oxygen. He’s still breathing, he hasn’t gave up at all," said Priscilla Maldonado, Ja'bari's mother. 

Priscilla Maldonado and Marin Gray are feeling the relief they’ve longed for since their son Ja'bari was born on New Year’s Day. The baby was born without skin from his neck down, and a severely damaged airway.

On Friday, the boy arrived at Texas Children’s Hospital. On Saturday, they got see him for the first time since arriving in Houston.

"As soon as we walked in, he was upset. You could see his heart rate was really high. But as soon as I told him that Mommy and Daddy finally got here, he literally just laid there," said Maldonado. "He stopped moving and he started moving his eyes, he recognized that we were actually there so he felt that comfort and he knew we were there." 

Before even arriving to Houston, they say people were already reaching out to help.

"Even on the road on the way here to Houston. We were getting phone calls for help. And I didn’t expect that," Maldonado said.

Norma Mottu was one of them.

"I know Houston. We have big hearts," said Mottu. "I don’t want them to worry about anything else other than Ja'bari."

She’s part of a group called Our Streets, Our Community. She says her network is coming together to make sure the parents don’t worry about things like parking fees at the hospital, food, and laundry.

"We just need to make sure that we uplift this family, because for some reason Ja'bari is still here, he’s been here three months," Mottu said.