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Bay Ridge parents seek cure for son’s rare disease

Little Pietro Scarso of Bay Ridge has a rare form of Muscular Dystrophy. His parents are working to raise awareness of the disease as well as money for research into a cure. Photo courtesy www.pietrosfight.org

Brooklyn Daily Eagle

Dayna Scarso knew something was wrong with her two-year-old son Pietro when she took him to the playground near her Bay Ridge home last year. “In the park, he was just slower than the other boys,” she told the Brooklyn Daily Eagle. “And I noticed that he had a lot of trouble climbing up stairs,” she said. 

But Pietro seemed so normal in other ways. He has an easy laugh, displays a curiosity about the things around him, and is affectionate with Scarso and her husband Mannie. “He’s awesome. He has a good heart,” his mom said.

Convinced that their son’s physical slowness was a sign of something wrong, the Scarsos took him from doctor to doctor, none of whom pinpointed anything wrong with the toddler.

“I was told that I was being a neurotic mother and that there was nothing wrong with him,” said Scarso, a real estate saleswoman-turned stay at home mom. Her maternal instinct told her differently. “I knew something was wrong,” she said.

On the recommendation of a pediatric surgeon, the couple took their little boy to a neurologist in Manhattan last July. “She was amazing. Within a minute of touching and feeling him, she diagnosed him,” Scarso said.

A test confirmed that what the doctor had suspected was true. It turned out that little Pietro has Duchenne Muscular Dystrophy http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001724/ , a rare form of the disease that affects one in every 3,500 male births. “I didn’t know what it was, but I knew it didn’t sound good,” Scarso said, recalling her reaction when the neurologist offered her diagnosis.

Scarso and her husband, a broker for private jet sales, were devastated by the news. “I remember before the tests results came back, I was praying to every high heaven that she was wrong,” Scarso said.

Most children with Duchenne Muscular Dystrophy are confined to a wheelchair by the time they are 12 years of age. Many die in their late teens of respiratory complications caused by the disease.

To date, there is no treatment or cure for the disease.

The Scarsos are determined to change that.

The couple is working to raise awareness of the disease and planning to organize fundraisers to provide money for research. They have set up a website http://www.pietrosfight.org/ to inform people of the disease. “Our goal is to get money into hands of researchers,” Scarso said. “Most of the money for treatment of illnesses comes from small organizations,” she said.

The Scarsos are getting help from a high-profile person. A friend of Dayna Scarso’s introduced her to state Sen. Marty Golden (R-Bay Ridge-southern Brooklyn) who took an interest in the family’s plight and vowed to help.

With Golden’s assistance, the Scarsos will host a fundraiser, “Fight Night! Pietro vs. DMD,” on March 7, at the El Caribe Country Club in Mill Basin. The event is sponsored by Bay Ridge Honda, Beyond Dance Center for the Performing Arts, CSE Productions and Pilo Arts Day Spa and Salon.

Golden is also introducing a resolution in the state senate calling for greater awareness of the disease and the need for a cure. The Scarso Family will join Golden in the senate chamber at some point in the near future for a presentation.

“I proudly join as a partner in Pietro’s Fight so to help Pietro and others who have been diagnosed with Duchenne Muscular Dystrophy.  New York City and state, and our nation, must take steps to end the fact that this is the most common and lethal childhood genetic disorder in the world,” Golden said.

Pietro is now three years old and is a lively little boy, his mother said. The Scarsos also have a two year old son named Nico. Nico has been tested and does not have the disease, Scarso said.

For more information on the fundraiser call 646-582-0800 or visit www.pietrosfight.org

 

 

January 14, 2013 - 4:50pm


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