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A Fighter Is Born

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.

News

The Senior Advisory Committee is the Senior group that helps plan trips, parties, and programs for all seniors in cooperation with the recreation and parks department. It consists of: Kathy Auro, Richard Bankowsky, Evelyn Iagrossi, Joe Leto, Ellen Moynahan, and Gloria Weinrich. Please feel free to suggest trips to anyone on the committee.

Preparedness is the best remedy for Ebola

Winthrop University Hospital hosted a presentation on the current Ebola epidemic, at the Garden City Library, on Tuesday, Nov. 11. Sponsored by the village’s Property Owners’ Associations, John F. Collins, president and CEO of Winthrop University Hospital and Dr. Michael Ammazzalorso, Winthrop’s Chief Medical Officer provided an overview of the disease along with an update on Winthrop’s preparedness plan.

Dr. Ammazzalorso began his presentation heeding that despite the waning in the press, the disease is still with us. He provided both historical and current day perspectives regarding the epidemic, advising that Ebola is not a new disease. The medical community has been aware of the disease for at least 40 years. Originating in the Congo, Ebola is a zoonosis a disease which has its reservoir in animals and was known for small sporadic outbreaks associated with people who handled bats and rodents or those who consumed bush meat. The current outbreak originated in West Africa, specifically Sierra Leone, Guinea and Liberia. He noted in Africa that more than 45,000 people have died from the disease.


Sports

Learn And Play Paddle Tennis

The recreation and parks department will offer beginner level platform tennis lessons at Community Park’s Platform Courts. This five-week course will offer the basic instruction and will be taught by certified platform instructor Sue Tarzian. Each class will be 1.5 hours in length. The cost of this program is $187.50. Classes began the week of Nov. 5. The following classes will be offered:

Beginners - Wednesdays at 7 p.m.

Advanced Beginners – Thursdays at 10:30 a.m.

This program is for beginners only and participants must be Garden City residents. To register, visit the recreation office at 108 Rockaway Ave.

Learn And Play Paddle Tennis

The recreation and parks department will offer beginner level platform tennis lessons at Community Park’s Platform Courts. This five-week course will offer the basic instruction and will be taught by certified platform instructor Sue Tarzian. Each class will be 1.5 hours in length. The cost of this program is $187.50. Classes begin the week of Nov. 5. The following classes will be offered:

Beginners - Wednesdays at 7 p.m.

Advanced Beginners – Thursdays at 10:30 a.m.

This program is for beginners only and participants must be Garden City residents. To register, please visit the recreation office at 108 Rockaway Ave. Space is limited so please register early.


Calendar

Sultans of String to play

Friday, November 21

Garden City Chamber Music Society Performance

Sunday, November 23

Marvelous Movie Matinée

Monday, November 24



Columns

1959: The Year The Music Stopped Playing
Written by Michael A. Miller, mmillercolumn@gmail.com

The Eccentric Heiress Of ‘Empty Mansions’
Written by Mike Barry, MFBarry@optonline.net

Yellow Margarine And A Pitch For The Ages
Written by Michael A. Miller, mmillercolumn@gmail.com