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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

September is Library Card Sign-up Month

Back to school means back to the Garden City Public Library. September is not only back to school month, it is also Library Card Sign-up Month. A library card is the most important school supply of all for both students and their parents. This September be sure your library card is in your wallet. If you don’t have one, sign up for a new one for you and for your children.

The Garden City Public Library offers programs for adults and for children of all ages. In addition, the library provides access to an extensive collection of books, periodicals, music CDs, audiobooks, and DVDS. The library also provides online access through its website www.gardencitypl.org to authoritative electronic databases as well as to downloadable eBooks, audiobooks, and music. With a valid library card, you can register for programs, borrow materials and museum passes, and access electronic resources.

The Garden City Historical Society is gearing up for a really big celebration. In 2015, the Society will mark the 40th anniversary of its founding, and the 10th anniversary of the opening of The Garden City Historical Society Museum.

To observe these two significant milestones and to further the Society’s capital campaign to restore the exterior of the museum building, the Society is planning a special event on May 14, 2015 at the Garden City Hotel. Early next year, an invitation to attend will be extended to residents and businesses in the village. The gala will include an open bar and full buffet, with music, mystery guests, a live auction and raffles.


Sports

The league started on Saturday, Sept. 13 at Garden City’s Tullamore Park. It runs from 11:30 a.m. to 1 p.m. on Saturdays. A uniform shirt and soccer balls are provided. Cleats and soccer shorts are recommended and players must wear shin guards. Age groups range from pre-k through 12th grade. Garden City residents and non-Garden City residents are welcome. Middle school and high school age volunteers are needed. No soccer experience is necessary. If you have any other questions, please contact Andy Garger at ajgarger@verizon.net or 516-775-8058.

— Submitted by the Challenger Soccer League

2014-15 Garden City Recreation Department Dance Conservatory

The Garden City Recreation Department’s Dance Conservatory Program is pleased to announce the start of registration for its upcoming 2014-15 season. Director Felicia Lovaglio, along with Mary Searson and the rest of her staff, are excited to start off another fantastic year. The dance conservatory offers classes to Garden City residents ages 3 through adult which are non-performance based. Age is determined by the start date of the desired class. The schedule and fees for this year’s youth classes are as follows (all classes are 55 minutes long unless otherwise noted):

Note: Registration is by mail only until Sept. 23. Participants MUST be the required age by the start of the program in order to register. Each session costs $220 for 22 weeks of class.


Calendar

Village Board of Trustees Meeting

Thursday, October 2

Benefit Yard Sale Goes To The Birds

Saturday, October 4

Marvelous Movie Matinée

Monday, October 6



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