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Published December 30, 2013, 07:50 PM

16-year-old Red River student born with rare genetic bone disorder determined to help others with same disorders

We bring you a story of hope and triumph from a Red River High School student. 16 year old Hannah Twedt of Grand Forks was born with a rare genetic bone disorder. Two years ago, Hannah started going blind and was given only a few months to live.

By: Cynthia Johnson, WDAZ

We bring you a story of hope and triumph from a Red River High School student. 16 year old Hannah Twedt of Grand Forks was born with a rare genetic bone disorder. Two years ago, Hannah started going blind and was given only a few months to live.

Hannah Twedt was born with virtually no bones in her skull. But after 15 surgeries, today, Hannah is a happy teenager who is giving back to those suffering with similar disorders. Hannah says she lives a pretty normal teenage life hanging out with friends, her dogs, and playing Candy Crush.

She has craniofacial syndrome and Saethre-Chotzens Syndrome, which means the bones in her skull formed improperly. When she was five years old, CAT scans showed a large section of her skull was wide open. In January of 2012, doctors used kryptonite in a complex surgery to reshape Hannah's skull.

Now Hannah says she enjoys raising money to send a child to the Children's Craniofacial Association family retreat in St. Louis next year. She's raised 800 dollars so far.

Hannah Twedt said, "To help other people get to do things too, since people with syndromes usually get kind of isolated, they don't get to do much."

"I couldn't be more proud of anyone. She could win Olympic medals and I couldn't be more proud of her," Hannah's Mother, Susan Twedt said.

Hannah got a gift card from Cher this Christmas. Cher is a national spokesperson for the CCA. Hannah still has a long road ahead of her. Her spine is deteriorating from scoliosis. She also has autism.

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