Las Vegas “Baby Incredible Hulk” Battles a Rare Genetic Disease
By TheNevadaGlobeStaff, January 9, 2023 11:26 am
LAS VEGAS, Nev. (702 Times, NV Globe) – A breathing tube will be required for “Baby Incredible Hulk” for the rest of his life.
A family from the Las Vegas Valley is sharing FOX5 how they look after their child who has an unique genetic disease.
“Niko has a deletion on chromosome 5q31.3. Only eight other patients worldwide are known to have this condition, according to the physicians. According to Susana Gastelum, it is referred to as 5q31.3 Microdeletion Syndrome.
Niko’s parents Susana and Alexis Gastelum refer to him as the “Baby Incredible Hulk” because of everything he has been through. According to reports, Niko has a condition that prevents him from breathing on his own, necessitating a 24-hour connection to a feeding tube and an oxygen breathing tube in his trachea. He won’t be able to walk, they add. According to his parents, this is how their son will always be.
I really don’t want to accept it. He seems to be quite resilient and displays new traits every day. Therefore, I don’t want to think that he will remain this way for the rest of his life, said the boy’s father, Alexis Gastelum.
“That’s awful. Sometimes it doesn’t feel real,” mother Susana Gastelum remarked.
As they search for a geneticist who can assist their kid, the parents claim that they are discussing this to increase awareness of the hereditary condition. They claim that because the sole local physician does not accept their insurance, they are compelled to search for a geneticist in Los Angeles and Utah.
The parents of Niko have created a number of YouTube videos to demonstrate what they do to take care of their baby., as well as to potentially assist other parents who may be suffering with similar issues. The pair illustrates how to remove moisture from Niko’s tubes, explains how they administer his medication, displays how to burp him with an empty syringe, and describes all the equipment required to keep him alive in the films. They claim that they have to perform these duties several times each day.
According to the family, a nursing home did provide assistance; someone came by from Monday through Friday. They formerly experienced insurance problems, and now they claim to be experiencing a nursing shortage and difficulty finding nurses to come to the residence. According to the pair, Niko has nine nearby physicians. Additionally, patients are required to carry all of their life-saving equipment to appointments at the doctor’s office.
“There are moments when I look at my hubby and suddenly start sobbing. Susana remarked, “Crying doesn’t solve anything.
The family is hoping that physicians who can help them would read about them and get in touch. Additionally, a GoFundMe account has been put up to assist the couple in funding an unique room they desire. Niko needs a place to reside, and funding for travel to find a doctor outside of the state is needed. They claim that money would also be used to help with the mounting medical expenses.
Credits: FOX 5 VEGAS
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