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Oregon boy with rare syndrome gets special greeting from Hollywood star

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    GOBLE, OR (KPTV) — A local little boy got a surprise from a big star last week.

Jessica Robinson from Goble, Oregon, said she and her two kids, Rowdy and Paisley, received a video of an audio recording last week.

The video begins with a written message: “Dear Rowdy, someone very special wanted to say hello, who could it be?”

Then, “Frozen’s” Princess Anna of Arendelle’s voice is heard loud and clear. Princess Anna, played by actress Kristen Bell, has a personalized message for 2-year-old Rowdy, who Robinson says is a huge fan of “Frozen.”

“Kristen is his favorite,” Robinson said. “He loves Anna in ‘Frozen.’ He watches ‘Frozen’ multiple times a day.”

In the recording, Princess Anna tells Rowdy hi, then says, “I just wanted to call and say hello, and tell you how excited I am for you to come see me and my sister Elsa at Disneyland.”

In a video Robinson sent to FOX 12, you can see Rowdy wiggle and smile as he listens to the message.

Robinson said Rowdy was born with a rare GJA1 gene mutation and was diagnosed with Oculodentodigital Dysphasia (ODDD Syndrome), which is causing his brain to atrophy.

The toddler can’t walk or talk, and Robinson says it’s unclear what Rowdy’s future will look like.

“[The doctors] aren’t able to tell us how long he’ll be cognitive or how long he will be here”” Robinson said, adding that there is no known treatment or cure.

Through a Facebook group, Robinson said she connected with another mom who was touched by Rowdy’s story. Robinson said the woman tagged Kristen Bell in a post after learning about Rowdy’s passion for the movie, and one of Bell’s assistants later reached out to Robinson.

“The next day we had a video, a video recording from Kristen Bell,” Robinson said.

Robinson says she feels blessed with the amount of support she has gotten from people both near and far.

“I was so appreciative that the family took the time to reach out to [Kristen Bell] and do all of that – it meant the world to us,” Robinson said.

Robinson said she and her family are trying to do everything they can to ensure Rowdy has a good life, and little gestures of kindness like the one they received from Bell go a long way.

“He still smiles through it all and we’re just really blessed. We’re blessed that he’s ours and even though it’s been a really hard path I wouldn’t change it,” Robinson said.

The family has a GoFundMe page set up to help Rowdy complete a bucket list of activities and experiences.

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CNN

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