Las Vegas ‘Baby Incredible Hulk’ fights rare genetic disorder
By Joe Vigil
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LAS VEGAS, Nevada (KVVU) — “Baby Incredible Hulk” will need breathing tube for the rest of his life
A Las Vegas Valley family is showing FOX5 how they care for their baby who has a rare genetic disorder.
“Niko has a deletion of his 5q31.3 chromosome. The doctors only know of eight other people in the world with this same disorder. It is called 5q31.3 Microdeletion Syndrome,” said Susana Gastelum.
Parents Susana and Alexis Gastelum call their baby Niko, Baby Incredible Hulk for all he’s been through. They say because of the disorder Niko can’t breathe on his own and must be hooked up to a feeding tube and oxygen for breathing tube in his trachea 24 hours a day. They also say he will not be able to walk. His parents say their son will be this way for the rest of his life.
“Honestly, I don’t want to believe it. To me he’s very strong and showing different things every day. So, for me I don’t want to believe that he’s going to be like how he is for the rest of his life,” said father Alexis Gastelum.
“It’s terrible. It doesn’t feel real sometimes,” said mother Susana Gastelum.
The parents say they are talking about this to raise awareness of the genetic disorder as they look for a geneticist who can help their son. They say they’re forced to look in Los Angeles and Utah for a geneticist, because the only local doctor does not take their insurance.
Niko’s parents have made several YouTube videos to show the public what they do to care for their son, and to hopefully help other parents who might be dealing with any like this. In the videos, the couple demonstrates how to get rid of moisture in Niko’s tubes, they explain how they give him medication, show how to burp Niko with an empty syringe and explain all the equipment that’s necessary to keep him alive. They say these are things they must do multiple times a day.
The family says it did have help from a nursing facility, someone came out Monday through Friday. At one point they had insurance issues and now say they’re dealing with a nursing shortage and they’re having trouble getting someone to the house. The couple says Niko has nine local doctors. And when they go to appointments, they must bring all their life saving equipment with them to the doctor’s office.
“I have sometimes where I look at my husband and start crying for no reason. Crying doesn’t help anything,” said Susana.
The family hopes doctors who can help them will see their story and contact them. They also have a GoFundMe set up which would help pay for a special room the couple wants to build where Niko can live, as well as help pay for transportation to look for a doctor out of state. They say they would also use money to help pay the never-ending medical bills.
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