Seven-year-old Pietro Scarso will finally have the opportunity to get his medicine at home to help him slow a debilitating muscle disease, thanks in part to another one of the annual benefits put on by the non-profit named for him.
Pietro’s Fight – a nonprofit co-founded by Dyker Heights parents Dayna and Manni Scarso in hopes of helping find a cure for Duchenne Muscular Dystrophy (DMD) – hosted its fifth annual Fight Night, “The Anniversary Knockout,” on Thursday, March 9 at the El Caribe Country Club (5945 Strickland Avenue).
The event, which typically funds the group’s efforts to find a cure for DMD – a recessive X-lined form of muscular dystrophy that affects one in every 3,500 to 5,000 boys, including Pietro, a seven-year-old boy who was diagnosed at just three — will fund even more this year, according to Pietro’s mother, Dayna.
“We’ve teamed up with two other non-profits, Michael’s Cause and Ryan’s Quest, to fund something called DMD Therapeutics,” Scarso told this paper prior to the event, stressing that there are few, if any drug candidates that currently demonstrate the same level of efficiency that DMD Therapeutics has in terms of restoring and preventing muscle damage in mdx mice.
Pietro currently receives treatments with Exondys 51 (also known as Eteplirsen, the first drug ever approved to treat the disease).
“Every year it gets more challenging,” Scarso said. “Though so many milestones have been achieved, we really are on the brink of turning this from a fatal disease to a curable disease.”
On the 89th week of a 96-week treatment, the dosage of Exondys 51 Pietro used to get in a neighboring state can now be infused by a nurse at home as early as May of this year, something the mother of two said is a sign of hope.
“Being a parent, there’s no guideline,” said Scarso, who started planning the milestone Fight Night around Christmastime and stressed that, despite the hours it takes from spending time with her family, the load has always been lightened by a caring support system of friends and volunteers. “We are doing our best.”
Though, Scarso said, there isn’t anything to complain about when it comes to Pietro, who is a big fan of hugs and “knows that he’s in a clinical trial.”
“He never gives up. He may not do a sport, but he stands on the sideline and cheers his brother on,” she said, noting also that Pietro has dreams of being able to play a sport — just like his brother — in the near future.
For those who attended the dinner dance, opportunities were made available to participate in a silent auction, a raffle and an open bar, all of which funded the Scarso family’s fight for a cure for DMD.
With a turnout of about 500 people, Scarso said the most rewarding part of the effort has been “seeing everyone year after year come in and support us.” In return, this year’s Fight Night honored four different people, each of them receiving an award for their assistance in Pietro’s current circumstances.
Among the honorees were Maria Castellano and Charles Fabbella of Ben Bay Realty with the Ultimate Fighter Award, decorated veteran Antonio Alaimo of Villabate Bakery with the Cure Fighter Award and Pietro’s good friend Rocco Coluccio Jr. of Menny Memories and Coluccio and Sons with the Love Fighter Award.
In their selfless efforts to push forth awareness, supporters have provided everything from catered cakes to entertainment, and are among the many donors and sponsors Scarso thanked for their help in the event.
Over the past five years Bay Ridge Honda and the Sabbagh family, Investors Bank, the Mastorakis family, Empire State Bank, the Vitali family, LoJack, Approved Oil, the Moniaros family, Team AG , Bubbles and Suds laundry, Jabour Realty, East Coast Energy Foundation Inc, Geico, Life Quality Motor Sales, New York Building Congress, Empire City Labs, Floral Fantasy/Scarpaci, Knights of Columbus, Kiwanis, Lions Club, Sinemax, Marino, SR Entertainment, Kapture and El Caribe have also assisted with furthering the fight to find a cure.
That sense of community, Scarso said, is contagious.
“I mean, look at Pietro’s face,” she said. “How can he not bring anyone together?”
Since its inception in 2012, Pietro’s Fight has raised more than $1 million towards finding a cure.
For more info on Pietro’s Fight, visit pietrosfight.org.