Metro Girl With Rare Condition Hopes To Make It To The Bayou - News9.com - Oklahoma City, OK - News, Weather, Video and Sports |

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Metro Girl With Rare Condition Hopes To Make It To The Bayou

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She was born with a rare genetic debilitating condition, and has gone through more than a dozen surgeries in her nearly 9 years, but an Oklahoma City girl is “winning.” She was born with a rare genetic debilitating condition, and has gone through more than a dozen surgeries in her nearly 9 years, but an Oklahoma City girl is “winning.”
OKLAHOMA CITY -

She was born with a rare genetic debilitating condition, and has gone through more than a dozen surgeries in her nearly 9 years, but an Oklahoma City girl is “winning.”

Keira Robinson was born with what's called Nagers Syndrome. It affects the development of a child's face, hands, and arms. Her family says there are just 200 documented cases of Nagers in the world.

Keira has endured 16 surgeries to correct her face, her neck, her stomach, and to re-assemble the four fingers on each of her hands.

Her family wants to get her to a world-wide conference on Nagers and Millers Syndrome in New Orleans in two weeks. There will be 40 other children from around the world with Nagers and their families there.

However, Keira has two brothers and a sister, her mother is her full-time caregiver, and her father drives a truck, so the $5,000 it will take to get her safely there and back is a tall order right now.

Her mother Keira says a gofundme.com effort has raised $1,500 so far.

“She wants to be a kid. She wants to be accepted just like everyone else.” Her dad John said Friday. “She needs to see people who are just like her. She's coming to that age where people stare at her, or people don't like her.”

There's so much to love about this little girl. Click here if you would like to donate.

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