It was another successful Saturday for the Scarso family as Pietro’s Fight – a local non-profit dedicated to finding a cure for Duchenne Muscular Dystrophy (DMD) – hosted its fifth annual “Pietro’s Fight to the Finish Line” 5k on September 16.
The disease is a recessive X-lined form of muscular dystrophy that affects one in every 3,500 to 5,000 boys, including the Scarsos’ son, Pietro, an eight-year-old boy who was diagnosed at just three.
Pietro’s Fight is a nonprofit co-founded by Dyker Heights parents Dayna and Manni Scarso – Pietro’s parents – in hopes of helping find a cure for Duchenne Muscular Dystrophy (DMD).
“It was exceptional,” Pietro’s mother, Dayna told this paper. “It was an amazing turnout. We raised a lot of money.”
This year, she said, Pietro – who, before last year, was limited to the sidelines or just a few strides – was determined to walk the entire race.
“He didn’t give up,” Scarso said. “Every year he just does a little more and it takes my breath away. He’s such a determined young boy. Instead of waiting at the finish line giving everybody high fives, he was walking alongside them. It was really incredible.”
Since the official approval of Exondys 51 (also known as Eteplirsen, the first drug ever approved to treat patients with DMD) this past June, Pietro is finally able to receive treatment from the comfort of his own home.
“It’s not in clinical trial anymore so we get to have the nurse at home and he doesn’t have to miss school anymore,” Scarso said. “Everything is so much easier.
“He’s getting older so the questions are coming in that are hard to answer, but I’m doing my best to keep him understanding the disease and what that means for boys like him,” she went on.
As for his condition, Scarso said, Pietro is “doing great.”
“He’s walking longer, which is the best thing for him,” she said, adding that now, he even gets to enjoy playing in the schoolyard.
“We’re taking it day by day,” Scarso stressed. “We’re keeping our heads up and are always looking for the next thing.”
According to Scarso, Pietro’s Fight is currently raising money for another new DMD therapy, still in its pre-human trial stages, that is showing promise. As for Pietro’s current treatment, Scarso said, “It’s supposed to slow the progress of the disease down and that’s what it’s doing, but we still need a cure at the end of the day.”
Since its inception in 2012, Pietro’s Fight has raised more than $1 million towards finding a cure.
“We will not stop until we END DMD,” Scarso aid. “We will not stop until Pietro has a chance at a normal life.”
Entertainment at this year’s run was provided by Charlie Cavallo of C&C Productions, Binxx the Clown and Tommy’s Costume Characters. Memories were captured by Daniel Marino of Marino Photography as well as Stas Furman of Factor5Films. Food was provided by Bagel Boy, H & L Bagels, Starbucks, Go Fresh or Go Home and Utz.
Other sponsors included the Kiwanis Club, Investors Bank, Roth & Co. Empire City Laboratories, Horizons in Dance and more.
“It takes a team like ours to come together and get the job done,” said Scarso.
For a full list of sponsors or for more information on Pietro’s Fight, visit www.pietrosfight.org.