Catherine Gaynor
Vincent Gaynor (c.), with his children Sophia (l.) and Jackson, looks out from a window at the new 1WTC building. Sophia was diagnosed with a rare degenerative disease over three years ago that the family has campaigned heavily to combat.
The Gaynor family has put up the good fight every day, and defied the odds.
Sophia Gaynor was diagnosed with a rare and relentless terminal disease at seven weeks old and given almost no possibility of living past her second birthday. Over three years later, she is the focal point of a Spinal Muscular Atrophy awareness organization that has raised nearly $2.5 million to help combat the disease.
On Thursday, Sophia’s Cure Foundation will hold an event in Long Island City to help fund the first ever human clinical trial for the affliction.
“The hardest part of this disease was watching her smile fade away,” said Sophia’s father, Vincent Gaynor, 35, a steamfitter currently working at the One World Trade Center site. “We spend every second of every day making sure that every moment is memorable.”
The degenerative disease affects roughly one in every 6,000 children, Gaynor said, and has left Sophia paralyzed entirely with the exception of her eyes.
She communicates by blinking to answer “yes” and “no” questions, he said, and requires the aid of a tracheostomy tube to breathe and a feeding tube to eat.
Gaynor and his wife, Catherine, attached a flat tray to her stroller so that the couple can take her to enjoy the activities of a healthy child.
But looking after a child with SMA, he noted, requires constant attention.
Catherine quit her position as an administrative assistant to take on a new job as Sophia’s primary caregiver.
“You have to become an occupational therapist, a physical therapist, and a critical care nurse,” said Vincent Gaynor. “You must become an expert or your child will perish.”
Thursday’s event is meant to raise awareness within the steamfitting industry about SMA, said Richard Roberts, business agent at large for Local 638, the union that employs Gaynor and has helped promote the fund-raiser.
Though Gaynor knows there’s no saying how long his daughter will live, he knows her life has been meaningful.
“It’s not about how long you’re here, it’s about what you accomplish,” he said. “We look at Sophia’s life as a success because she’s helping put an end to this disease.”
The fund-raiser is at 7 p.m. at Water’s Edge restaurant in Long Island City. For more information, go to sophiascure.org.
