Three-year-old Thomas Kevin Onorato was born with microvillus inclusion disease, which causes intestinal failure and makes the body unable to absorb nutrition and maintain hydration.
"They had to intubate him because he wasn't breathing on his own," mom Melissa Onorato said. "They didn't know what was wrong with him, but it just didn't look good."
Onorato must be fed intravenously.
A few years ago, parents Tom and Melissa, of Franklin Square, started the TKO Strong Foundation. So far, they have raised more than $100,000 for research of the rare disease.
"My husband and I, we're not going to stop until we get...a better treatment option," Melissa said. "A cure would be amazing."
They recently donated $75,000 to a researcher in the Netherlands, and they are also planning to fund a study by Boston Children's Hospital and Harvard University.
"If there's no research getting done for him or this disease, there's no chance of it getting cured," his father said. "Our family, friends, work, sponsors, have been amazing to us."
New York state legislators are also getting involved in the Onoratos' crusade, recently declaring this September 16 "Microvillus Inclusion Disease Awareness Day."
"As a parent, the amount of love you have for your child, you would do anything for them," Melissa said. "You would go to the ends of the earth, which I think we have proved we'll do whatever we have to."
The TKO Strong Foundation will be holding a family-friendly fundraiser on Saturday October 28 at 2 p.m. at the Plattduetsche Park Biergarten in Franklin Square.
To learn more about the TKO Strong Foundation, visit: TKOStrongFoundation.org.