'Special Books by Special Kids' - NBC Boston

'Special Books by Special Kids'

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    NEWSLETTERS

    (Published Thursday, May 18, 2017)

    A special education teacher is on a mission to make sure no child with a disability or a diagnosis of any kind is stigmatized.

    Two years ago, Chris Ulmer posted a video online of him complimenting his students at the beginning of class. A few days later, that video had 60 million views. He knew he was onto something. Now, he is traveling all over the world to make videos with children, most with special needs. He posts them on his Facebook page and he calls it "Special Books by Special Kids."

    "The truth is, that child with a condition wants to interact with you and form a bond just as much as anyone else," Ulmer said in Medford recently.

    Ulmer was in the area to meet 3-year-old Robbie and to make a video with her.

    "You are a star and you deserve to be seen," he told Robbie as NBC Boston interviewed her mom, Kasey.

    "The day we got the diagnosis, I told my husband I would never be happy again," Kasey recalled.

    Robbie has an extremely rare genetic disorder with no known cure.

    "The only other cases they had known of at that time were nine children in the middle east – from four families, and three of the families were blood-related marriages – and then us," Kasey said.

    So she and her husband are doing what parents do — everything they can. They don't know when Robbie's condition will get worse, so they've created a foundation to raise money for gene therapy research.

    Kasey says it's their best hope.

    "Worst case, we keep trying, and if we don't help her, we help someone else," she said, holding back tears.

    For now, Robbie is doing OK. She has great doctors, strong and determined parents, and now, she has Ulmer, to introduce her beautiful smile to the world.

    If you would like to help Ulmer continue his mission, click here.

    If you'd like to learn more about Robbie and her parents' non-profit, click here.


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