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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

Foofa

Although a bit unsure at first, all Foofa needs is a little bit of love and patience to bring out his true affectionate self. A favorite with the handlers, Foofa is proving an excellent student with his training, loves long walks on the trail, and enjoys his “pampering” sessions with petting and brushing.

Yoshi

Just like the Mario character, this little guy will keep you smiling all day long. Yoshi happily greets all people he meets, gets along well with his fellow canines, and loves long walks and petting sessions. Yoshi would make a wonderful addition in just about any home.

New leaders In Garden City Public Schools

Due to retirements, Garden City Public Schools is welcoming two new administrators: Dawn Cerrone will serve as the director of Athletics and Physical Education, and Lynette Abruzzo was appointed as the director of Pupil Personnel Services.

Cerrone was awarded her building and district administrative certificates from Albany’s College of St. Rose in 2008 and 2009, respectively. She received her Master’s in Health Education from Hofstra University in 1989 and her Bachelor’s in Physical Education from St. Bonaventure University in 1986.


Sports

Fall Roller Hockey Programs Announced

The Garden City Recreation and Parks Department will once again offer various roller hockey programs this fall for both youth & adults who reside in the Inc. Village of Garden City. Whether you played in the past or looking to get involved, there is no better time to sign up and experience all the fun. All programs take place at the roller rink located at Community Park. Please note at this time, the recreation department is just announcing its programs. Fees and registration information will be announced at a later date.

This season, the roller hockey programs are broken down into grades. Please pay careful attention as grades and dates/times have changed:

Garden City gals lead FLG

to three championships

The FLG 2018 girls have established themselves as one of FLG’s premier teams of the summer. Garden City’s Julia Kavan and Anna Mandaro at the midfield and Megan Sprotte and Ann Sullivan defensively led their team to three championships this summer. The girls “really started to gel and play as a unit,” said Coach McGinty, successfully executing new plays, transitioning well and crashing on defense. With the improvements across the board, the team hasn’t lost a game since the first tournament of the summer. These girls were leaders on and off the field and are taking FLG Girls Lacrosse to the next level.


Calendar

Friday Night Promenade

Friday, August 22

The Little Mermaid JR

Saturday, August 23

Getting Your Feet Wet

Tuesday, Aug. 26



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