Editor’s Note: Welcome to Inside Out, our weekly roundup of stories about Staten Islanders making waves, showing up, supporting our community, and making our neighborhood a special place to live. Do you have a story for Inside Out? Email Carol Ann Benanti at firstname.lastname@example.org.
Staten Island, NY – Reed’s 2nd Annual Gathering! Set to be Saturday, October 1 from 11 a.m. to 7 p.m. at Nansen Park in the Reed community of Travis, organizers say there will be something for everyone.
At just 2 1/2, when the coronavirus pandemic was rampant, Reid Renon, now 5, was diagnosed with Morquio A syndrome, an extremely rare genetic disorder caused by the body’s inability to process waste due to an enzyme deficiency.
Not only will the fundraising proceeds help Reed’s care and treatment, but will also fund research to find a cure for Morquio A syndrome, an extremely rare genetic disorder caused by the body’s inability to process waste due to an enzyme deficiency.
The condition can cause progressive damage to a child’s central nervous system, spine, heart, organs, bones, joints, eyes, ears, and respiratory system, and can cause physical disabilities.
Children with Morquio A syndrome are missing or do not produce enough enzymes that break down the sugar naturally produced in the body. The disorder affects approximately 200,000 to 300,000 births.
“Reed was diagnosed at the beginning of the pandemic, and it’s a difficult time for doctors and specialists and a time when everything has stopped,” said Reed’s mother, a retail health nurse. “Surgery had to be done to put him in port. And that was at a time when operating rooms were closed and only one of the parents was allowed to be with him.”
It was said that there is no cure for this disease, which is said to be progressive and primarily affects the skeletal systems.
The Rinons have now formed the “Rally for Reed Foundation Inc.,” in order to better help liquidate the funds raised to donate to Morquio research. They plan to host a fundraiser each year until a cure is found.
And although Red’s 3-year-old sister, Ruby, was a carrier, she did not contract the disease.
And since Reed’s parents are both medical professionals—his father is an emergency room nurse at the University of Staten Island Hospital, Prince Bay—Renon’s family is well aware of their son’s condition and much-needed treatments and follow-up.
Reed is using a hearing aid and will have hip surgery within the next six months.
But the Renon family is hopeful that with more research funded, a cure will be on the horizon.
Every week on Tuesdays, Reed undergoes a four-hour injection at his home in Travis with the help of a follow-up visiting nurse. He receives help at school through the health section, physical and occupational therapy.
The medication he’s receiving is called Vimizim, and it’s a synthetic version of the enzyme he’s naturally lacking — an enzyme that can break down some glucose molecules to help prevent them from accumulating and attacking his body.
“We put a huge responsibility on doing every bit of research possible, making the best impact and helping kids like Reed who need it. We also do a great deal of outreach to other Morquio A families,” adds Caroline.
“Rally for Reid! Fun money making
On tap will have plenty of draw baskets, DJ and live band, as well as face painting, rock wall climbing, garden games, snorkeling tank, mini golf and balloon animals.
According to Reed’s mother, Carolyn Pellisi-Renon, Reed’s favorite group is the Beatles, so the Beatles tribute will also be a part of the day’s fare, as will the Mac truck (mac and cheese) and many more.
While several hundred tickets have already been purchased for children and adults, tickets until the day of the event can still be purchased at the door – with cash preferred on that day.
Those who wish to donate to Reed and the Rinon family can do so through VenmoHelloMyNameisReed
Tickets can be purchased now @ https://www.tickettailor.com/events/rallyforreed/727838
Celebrations – September. September 11th. 17
Sunday is the birthday of Calvin Sprung, Cindy Lyon, Michel Tosi, Jeremy Andrew, Fred Fenell, James Prestia, Julia Adenulfi, Camille Lingosek, Dennis B. Hanavi Sr., Brad Buzza, Drew Bertinelli, and twins Michael and Matthew Pelicia.
Monday birthday greetings to Richmond County District Attorney Michael McMahon, Caroline Hart Carr, Colette Curry, Lisa Horner, Krista Tringali, Neil Bayraktar, Danny Donnelly, Cole James Noss, Anthony Anello and twins Christopher and Alex Copcita
Happy Anniversary Monday to Camille and Robert Morey.
Best Birthday Tuesdays for Joseph Ferreri, Carol “Carrie” Melsa, Beth Fennell, Kiwanna Rich, Veronica Ross, Harvey Nudelman, Louis Mottola Jr., Jimmy Howarth and Jon Vento.
Happy wedding anniversary wishes to Norma, John Mondelli, Linda Cohen, Roy Fishman, Joyce, Tom Cunningham, Mary and James Siculella who celebrated their 42nd birthday and were married at Holy Child Church RC in 1980.
Happy birthdays Wednesday to District Vice President Ed Burke, Senior Counsel in the Office of Borough President Vito Vosella, Anthony (Tony) DiMaio, Iris Cooper, Olivia Blasey, Debra Aliva, Elaine Carroll, and her brother Tom Pierre.
Wednesday is also the birthday of Lindsay Dorothy O’Keefe, Bernice Farrell, Edward Franzreb V, Steven Lapcevic, Helen Adams, Phyllis Bosco and Jane Logan.
Happy Anniversary Wednesday to Maria, Joe Primus, Nancy and Vincent Russo.
Happy Birthday Thursday to Brian J. Lalin, Executive Editor of Advance, Rose Miranda, Anna Pallotta and Danny Lehman.
Friday is the birthday of Mary Ann Bogadis and Vincent James Duggan.
Happy Friday Anniversary Laurie and Paul Anilo.
Christmas cards in the mail on Saturday for New Dorp gastroenterologist Dr. Daniel Megna, Jennifer Isler-Greenstagen, Logan Carmine Noss, twins Mary-Kate and Matthew Cassidy, Kathleen Glosky and Joseph Marron.
Saturday is Sharee, Phil Balletto, Ann and Ken McBride’s wedding anniversary time.
Wendy and Jack Flanagan celebrate their wedding anniversary on Saturday and Oscar and Melody Betancourt’s wedding anniversary.