Three-year old Sophia Gaynor of Wantagh is beating the odds in her battle with a terminal and aggressive disease called Spinal Muscular Atrophy (SMA) and the Steamfitters Local 638 Union where her father works is doing their part to make sure she continues to live.
Most children who suffer from SMA Type 1 do not reach the age of two but Gaynor, who resides in the North Bellmore School District, has lived nearly twice that long. Gaynor, who is now totally paralyzed and cannot swallow or speak, earlier this month was the first child to enter the new Freedom Tower where her father Vincent is currently working in his job as a steamfitter. Gaynor's steamfitter colleagues are uniting Thursday night for a fundraiser at Waters Edge in Long Island City aimed at finding a cure cure for SMA with proceeds benefiting the Sophia’s Cure Foundation.
“Vincent has been a dedicated steamfitter for years and it was only natural that we join together, as a union and with others in our industry, to support Sophia’s Cure Foundation,” said Patrick Dolan, president, Enterprise Association of Steamfitters Local 638. “The Gaynor family has bravely fought against this terrible disease and we cannot let them do this alone. Steamfitters stick together.”
“Vincent and his family have worked tirelessly to raise money for a cure,” said Richard Roberts, Business Agent at Large, Enterprise Association of Steamfitters Local 638."The steamfitting community in New York is like a brotherhood and we are standing united with the Gaynor family in the fight against SMA.”
The fundraising dinner for the Sophia’s Cure Foundation will honor Dolan and Roberts for their dedication and support in finding a cure for SMA. To date, Dolan and Roberts and others in New York City's steamfitting industry have helped raise nearly $2.5 million for SMA research.
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Thursday's fundraiser is being held as part of SMA Awareness Month. Gaynor was born on Feb., 27, 2009 as a normal and healthy child until her parents noticed that she stopped moving at two weeks of age. Several weeks later, Gaynor was diagnosed with SMA Type 1, a disease that ravages the body leading to acute paralysis and the need for respiratory support and a feeding tube.
Former American Idol contestant and Merrick resident Robbie Rosen brought attention to SMA and Sophia's Cure Foundation last year when he wrote a song in honor of Gaynor called "Make it Through" that at a New York Islanders game.
“The doctors told us she had a 50 percent chance of dying within the first six months,” said Vincent Gaynor. “We were devastated when we found out about the diagnosis and locked ourselves in our house for three days. We decided to stop feeling sorry for ourselves and decided to fight back against SMA.”
The Gaynor family decided to be proactive in finding a cure for their daughter by launching Sophia’s Cure Foundation. There is no treatment or cure yet for SMA yet, but the family is hopeful that groundbreaking research, partially funded by Sophia’s Cure, will lead to progress.
“Recognizing the battle we were facing, the Steamfitters Union threw a benefit for my family and I was fortunate enough to spend six months at home with her," Gaynor said. "You can’t put a price tag on that time that we spent together as a family."
The union, with the support of Steamfitting Contractors at the Mechanical Contractors Association of New York, also arranged a transfer for Gaynor to work as shop steward at Long Island Jewish Hospital where a major construction project was underway and where Sophia was receiving treatment.
“As an industry it’s important that we stand with each other and help Vincent and his family fight for a cure,” said Tony Saparito, executive vice president of the Mechanical Contractors Association of New York. “We’ve all been inspired by the Gaynor family and their dedication the last three years.”
For more information about Thursday's fundraiser and Sophia’s Cure Foundation, log onto the organization's website.