By Eden Laikin.
A Franklyn Square couple is hoping to bring awareness to the little known, yet potentially deadly, disease that afflicts their 2-year old son, and to raise money to fund more research into the cause and cure. A fundraising event will be held on Saturday, September 12, from 1pm-6pm at the Plattduetsche Park Biergarten in Franklin Square.
Two-year old Thomas Kevin Onorato is one of only about 20 people in the U.S. with the extremely rare genetic disease – Microvillus Inclusion Disease.
Thomas’ parents started TKO Strong Foundation, shortly after their son’s diagnosis, to “knock out” the little known intestinal failure disorder that keeps Thomas from being able to digest solid food or absorb any nutrients. Thomas receives fluid nutrients through an IV line that was permanently placed in his chest tube. Caring for Thomas has become his mother’s fulltime job.
Only after 6 months of life-threatening illnesses and complications, did a genetic test reveal the gene mutation that caused Thomas this serious disease.
Microvillus inclusion disease prevents the absorption of nutrients from food during digestion, resulting in malnutrition and dehydration. Affected infants often have difficulty gaining weight and growing at the expected rate (failure to thrive), developmental delay, liver and kidney problems, and thinning of the bones (osteoporosis). Some affected individuals develop cholestasis, which is a
reduced ability to produce and release a digestive fluid called bile. Cholestasis leads to irreversible liver disease (cirrhosis).
In individuals with microvillus inclusion disease, lifelong nutritional support is needed and given through intravenous feedings (parenteral nutrition). Even with nutritional supplementation, most children with microvillus inclusion disease do not survive beyond childhood. However, slowly, technological and medical advances have been made.
The prevalence of microvillus inclusion disease is unknown, but at least 200 cases have been reported in Europe, and there are at least 20 cases currently in the United States.
Due to this diseases’ rarity there is very little research being done. But Melissa and Thomas Onorato say they will not accept that there is nothing they can do. So they’ve taken the initiative to raise money to fund research for this disease.
“We will not stop advocating and fighting for our son’s life,” they say. “We founded the TKO Strong Foundation, Inc. to not only fund research but to spread awareness. We have connected with other families and will stop at nothing to do our part to help all of our children.”
The event will include family fun, children activities, a Chinese auction and live music. For more information about this event, how to donate or be a sponsor, visit
http://www.tkostrongfoundation.org or email firstname.lastname@example.org. Adult door donation: $25, Children 12 and under: FREE.