Three-year-old Thomas Kevin Onorato spent Tuesday at home in Franklin Square doing what 3-year-olds do.
He let out a hearty laugh as he played with his Smurfs. He sang his ABCs. The happy little boy clutched Curious George, the same mischievous monkey he snuggles with every night.
Although Thomas appeared happy and healthy, he suffers from microvillus inclusion disease, or MVID, a rare genetic disorder that has robbed his intestines of the ability to properly absorb nutrients and fluids.
His parents, Melissa and Tom Onorato, fear they could outlive their son, but they refuse to give up.
Through a foundation they started in 2014, the couple is searching for a new treatment to thwart the disease, which can lead to dehydration, malnutrition and even death.
“You think about your kids getting married and having children and being a grandparent,” said Melissa Onorato, 34, who teaches English as a second language at a Queens middle school, “and then to be a young parent, and then have to think about a life that doesn’t include him, it just, I can’t fathom it.”
So far, they have raised more than $100,000 for treatment research through their TKO Strong Foundation and are now hoping to raise money to help fund a research project at Boston Children’s Hospital.
Most children diagnosed with MVID don’t live past childhood, Melissa Onorato said, but she and her husband are trying to beat steep odds.
Each night at about 6, they hook Thomas up to an IV infusion that runs for 14 hours to provide the fluid and nutrition he needs, his mother said.
While IV nutrition is saving Thomas’ life, it can also lead to liver failure, Melissa Onorato said. As a result, children diagnosed with MVID sometimes require risky organ transplants.
The Onoratos’ goal is to find healthier, alternative treatment options and eventually a cure.
They recently donated $75,000 to a rare-disease researcher in the Netherlands. The Onoratos hold community fundraisers and galas, sell TKO Strong merchandise and successfully worked with politicians to designate this Sept. 16 as the first statewide MVID Awareness Day.
Their next fundraiser will be a family-friendly event at Plattduetsche Park in Franklin Square on Oct. 28.
“It restores your faith in humanity that people are so willing to give and to help,” Melissa Onorato said.
MVID affects fewer than one in a million people, said Dr. Bram Raphael, Thomas’ gastroenterologist at Boston Children’s Hospital. With MVID and other “orphan diseases” that affect a small percentage of the population, pharmaceutical companies have less incentive to work toward a cure, Raphael said.
While being on IV nutrition “is not easy,” Thomas seems to be responding well to his treatment, and physicians are seeing children live longer lives as doctors work to prevent liver damage, infection and other IV complications, Raphael said.
With the support of their family, friends, church and local community, Tom Onorato, 39, an office manager at All Island Dermatology in Garden City, said the couple has a “TKO Strong army” behind them.
“That means a lot . . . when you’re not alone, when there’s people in your corner,” he said.