NJ Boy With Rare Eye Cancer Finds Support on Social Media - NBC New York

NJ Boy With Rare Eye Cancer Finds Support on Social Media

Nico Santoli was diagnosed with retinoblastoma last September



    Nico Santoli, 2, was diagnosed with a rare eye cancer back in September. His parents have since gone public, seeking help and sharing their son's story. Now support is pouring in from celebrities and strangers around the world. Checkey Beckford reports. (Published Thursday, Jan. 31, 2013)

    A New Jersey family's effort to raise money for treatment of their 2-year-old son's eye cancer and spread awareness of the rare disease is finding traction thanks to social media.

    Nico Santoli, of Oradell in Bergen County, was diagnosed with unilateral retinoblastoma in September 2012, a rare childhood cancer in which a malignant tumor grows on the retina, according to his father, Dominic Santoli.

    Santoli, a football coach at Bergen Catholic High School, said he fell apart when he and his wife received the official diagnosis at the doctor's office.

    "I grabbed [Nico] and ran out of the place, and I was on some street corner in New York City laying on my back with my son clutched to my chest," he said. 

    But Dominic says young Nico gave him the strength to get up and fight. 

    "He got up in my face and he said, 'Daddy!' And he just started giggling," he said. "And I was like, 'What am I doing? I have to get up, go back in there and deal with this." 

    Santoli wrote on a Facebook page dedicated to tracking Nico's fight against the cancer, "To this day I can't stop thinking about how in my darkest hour, hundreds of people in my school's community reached out to help me in every way possible."

    The Facebook page #ForNico reflects just how quickly supporters rallied around the boy: in just four months, the page has amassed nearly 37,000 followers. It features photos and videos of supporters -- including U.S. service members, and professional athletes and celebrities like Leonardo DiCaprio, Jessica Simpson and Aaron Rogers -- wearing shirts with "#ForNico" printed on them.

    In a triumphant post dated Jan. 9, Dominic Santoli wrote, "My hands are shaking as I can barely type... MY SON'S TUMOR IS DEAD!!!"

    Santoli said 40 percent of the cancerous seeds and fluids in Nico's eye were calcified after just one treatment of intravitreal melphalan therapy. Nico is slated to undergo four more treatments.

    "This kid is smiling and hugging everybody -- strangers, people he knows," Santoli said. "He's the best. We just keep asking for prayers." 

    Retinoblastoma occurs when the cells that grow to form the retina fail to stop reproducing and form a tumor on the retina, according to Santoli. The tumors can also break out and spread to other parts of the eye, and eventually outside to lymph nodes and other organs.

    Retinoblastoma most often in children ages 5 years and under, and between 200 to 300 children are diagnosed with the cancer each year. It is highly curable if treated early. 

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