April 19 fundraiser to be
held for baby with rare disease
Tom Onorato, the nephew and office manager of Dr. Joseph Onorato Garden City practice All Island Dermatology Plastic Surgery & Laser Center, recently celebrated the birth of a baby boy with his wife Melissa. Both were thrilled when Thomas Kevin Onorato came into the world on September 10, 2013. Despite being born five weeks early, baby Thomas managed to surprise his parents with his indomitable spirit and was sent home with a clean bill of health. A mere four days later began the fight for Thomas’ life.
A check up days after Thomas’ release from the hospital revealed a dangerous weight loss from 6.5 ounces to 4.6 ounces. Melissa Onorato was advised to rush to North Shore Hospital. The pediatrician refrained from calling an ambulance because she didn’t think there was enough time. Upon arrival, Melissa found a cadre of doctors and nurses waiting for them. Time was of the essence and doctors found Thomas’ condition to be critical. His temperature was lower than normal, he was dangerously dehydrated, had labored breathing and his kidneys shut down.
Thus began the Onoratos’ journey to determine what was causing their son’s illness. Seven months old now, Thomas spent four months of his life hospitalized. It would take doctors six months to find a diagnosis. Thomas has endured countless medical tests and surgeries, mostly leading to dead ends. Specialists from North Shore Hospital and Columbia Presbyterian Morgan Stanley Children’s Hospital (Columbia) have been stumped by Thomas’ illness. At first doctors believed he may be suffering from a metabolic disease, kidney or gastrointestinal issue or a milk protein allergy. However, all tests were negative. After invasive medical procedures such as a spinal tap, four blood transfusions, two endoscopies, colonoscopies, intestinal biopsies, broviac surgery and extensive blood and lab work evaluated nationally and internationally—the Onoratos finally have a diagnosis.
Doctors have determined that Thomas, who is unable to eat and absorb nutrients, is suffering from an orphan or rare condition, called microvillous inclusion disease. This young couple is now on a mission to save their son and foster advocacy for this disease. They are asking the entire community to join them on April 19 at the Plattduetsche Park Restaurant in Franklin Square for a fundraiser to help defray medical expenses and raise awareness. There is a $25 donation for adults and no charge for children, food and beverage are additional. The Onoratos are working on creating a family event with a bouncy castle for children, face painting, live music, auctions and more.
Thomas’ initials, “TKO,” in boxing vernacular means “technical knockout.” Tom, who has been awestruck by his son’s strength, began calling him “TKO” and they have dubbed the fundraiser and Thomas’ fight: “TKO Strong.” Thomas’ diagnosis is atypical. Biopsy results have been negative. The diagnosis has been confirmed clinically and genetically. Doctors at Columbia intend to document Thomas’ case in the hopes of helping other children suffering similar symptoms.
Facing any disease is difficult but battling a rare disease has presented a myriad of additional struggles.
“A rare disease diagnosis is challenging because there is limited available information,” said Melissa Onorato. “There is no access to support groups, clinical trials or nonprofits.”
This is another obstacle, the Onoratos would like to fix. In the future, the couple also intend to improve advocacy for this disease.
Thomas is now Total Parenteral Dependent (TPN) which is intravenous or IV nutrition. He has a surgically-placed catheter in his chest called a broviac. This treatment requires being hooked up to an IV 20 hours a day. It is likely that Thomas will be TPN dependent the rest of his life, though he does consume small amounts of food. Faced with many unknowns, the Onoratos embrace the positives. For now, Thomas has been tolerating treatment and growing.
For further information or to make a donation, visit https://www.giveforward.com/fundraiser/h614/tko-strong. Fundraiser will be held on Saturday, April 19 at 2:00 p.m. at Plattduetsche Park Restaurant, 1132 Hempstead Turnpike, Franklin Square, NY. Adults $25 donation, children free. Food and beverage are additional and the beer garden will be open.
