On Thursday, March 10, Melissa and Thomas Onorato, their son Thomas Kevin and fellow Long Islanders will gather to raise awareness and funds for those suffering from rare genetic diseases.
The TKO Strong Foundation 2016 Fundraising Gala isn’t your typical fundraiser. Yes, cocktail attire is recommended and they’ll be a dinner with a DJ and dancing but it’s the opportunity to connect with and support others that will make the night so special for the Onoratos.
“We’re raising awareness that this disease exists. It’s very rare, and there are limited options and research,” Melissa said.
Melissa and Thomas have been working to raise awareness and funds for those suffering from intestinal failure caused by Microvillus Inclusion Disease and other rare genetic diseases for the past few years. It started with a day they knew was going to change their lives, the birth of their son, Thomas Kevin.
Several days after Thomas and Melissa came home with Thomas Kevin in September of 2013, his kidneys started to fail. Rushed to the hospital, doctors struggled to find a cause for his inability to retain food or fluids. Two months later, genetic tests revealed that Thomas Kevin had Microvillus Inclusion Disease.
“Thomas cannot absorb anything through his intestines so the IV has nutrients that are already broken down,” Melissa said.
For the rest of his life, Thomas Kevin will be hooked up to TPN (total parenteral nutrition), meaning he will eat intravenously.
While doctors found the cause of Thomas Kevin’s intestinal failure, they’re struggling to find a cure for MID. Dozens of children around the world suffer from MID, and as Thomas and Melissa began to learn more about the disease they started reaching out to connect families facing the same problems.
“When we first received the diagnosis it was extremely overwhelming and heartbreaking… We felt very much alone and scared about what the future would be like for Thomas. Meeting these people gave us hope because these kids were older than Thomas,” Melissa said.
The parents stay connected to give support and answer questions that doctors can’t, they have insight of 5-10 years experience. “We feel that we’re not alone any more,” added Melissa.
It’s an experience they hope others will find at the gala as together they work to change lives.