Long Island girl inspiration behind new cure for disease

October 3, 2012 3:37:13 PM PDT
A remarkable story of love, perseverance and heartbreak, and it all surrounds a young and very sick little girl from Long Island.

She suffers from a deadly degenerative disease.

Her parents are working tirelessly to raise money to find a cure.

Amazingly, they did but in a tragic twist that vaccine that will help so many others will not help their daughter.

"It was the best day of our life. We became parents for the very first time," said Catherine Gaynor.

When Sophia Gaynor came into this world she looked like any other healthy happy baby.

But two weeks later parents Catherine and Vincent Gaynor began to notice Sophia wasn't moving her legs or hands very well.

Doctors diagnosed Sophia with Spinal Muscular Atrophy, a terminal disease that affects one in every six thousand children.

The Gaynor's retreated into their home and cried for days.

"At a moment my husband got up and opened up the blinds and he said no we're not going to take this we're going to fight and we're going to save her," said Catherine.

Three and a half years later Sophia has beaten the odds.

She can't move and can't breathe or eat on her own.

Her mind though is all there.

The life in her eyes is what's inspired her parents, just a stay at home mom and a construction worker to find a cure for Sophia's disease. And they may have.

"This is revolutionary this has never been seen in this disease," said Vincent.

Over the past few years the Gaynor's have raised more than $2 million through the Sophia's Cure Foundation to fund the research of Dr. Brian Kaspar, at Nationwide Children's Hospital In Ohio.

Dr. Kaspar has developed a vaccine that given one time at birth stops the disease.

The FDA is set to approve human clinical trials of the vaccine as soon as early next year.

The vaccine will not cure Sophia.

But it could slow the progression of the disease and allow her more time with her parents and younger brother Jackson.

LINK: www.sophiascure.org

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