Anton Community Newspapers  •  132 East 2nd Street  •  Mineola, NY 11501  •  Phone: 516-747-8282  •  FAX: 516-742-5867
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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

Have you considered adding running to your exercise regimen but not sure how to get started? Are you concerned about past injuries? Runners, from experienced to beginner, are sidelined every year due to injury. Physical Therapy Options (PTO) wants to help runners get off to a great start this fall and is pleased to offer the community an opportunity to receive a free comprehensive “Running Analysis.”

 

Physical Therapist Lisa Coors, founder of PTO, views this offering as part of PTO’s mission to help patients live a balanced and healthy lifestyle. 

Yard sale announced

 

The Garden City Bird Sanctuary/Tanners Pond Environmental Center recently announced its annual Fall Benefit Yard Sale. The sale will be held on Saturday, Oct. 4, from 9 a.m. to 3 p.m., located outdoors inside the front gate at the sanctuary. Vendors are being sought. A 10 x 17 foot selling area is $45 for the day. (Includes space for selling & space to park one car next to selling space)


Sports

Dance Conservatory Program

 

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. 

 

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. The schedule and fees for this year’s youth classes are as follows (all classes are 55 minutes long unless otherwise noted): 

Fall Children’s Tennis Classes

Registration for the start of the Fall 2014 Indoor Tennis Program for Children has begun at the Community Park Tennis Center. Walkins and non-resident children attending Garden City Public Schools* will be accepted beginning Sept. 11. Please make checks payable to the “Inc. Village of Garden City." Please note—classes are not considered day care and can not be declared for tax exemption.

* Non resident children who would like to register for the tennis program must prove they attend one of the Garden City Public Schools. Proof must accompany registration. An additional $50 fee will pertain to anyone in this category.

10 weeks of classes—classes will begin Thursday, Sept. 18


Calendar

Living With Pulmonary Fibrosis Program - September 18

Harpeth Rising Concert - September 19 

JV Football - September 20


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