Indiana mother seeks help for daughter who may have only diagnos - WDRB 41 Louisville News

Indiana mother seeks help for daughter who may have only diagnosed case of rare condition

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Kaylee Blanton Drake Kaylee Blanton Drake
Amanda Drake, Kaylee's mother Amanda Drake, Kaylee's mother

JEFFERSONVILLE, Ind. (WDRB) -- Inside Amanda Drake’s home in Jeffersonville, pictures of her 5-year-old daughter Kaylee decorate the walls.

“Kaylee is the happiest child you’ll ever meet,” Drake said. “When she was born, I promised her I was going to give her a magical childhood.”

Like most girls her age, Kaylee is high-energy. She loves to play and swim.

Drake says her daughter also has autism, and she doesn’t speak.

“It’s to the point where she could do something for 15-20 minutes that she loves, and the next thing you know, she’s dropped down and can’t do anything for hours,” Drake said. “I’ve never seen anyone hurt as much as her. I really haven’t.”

Part of the reason for the young girl’s pain is another condition that is detailed in a letter from the child’s doctor.

According to that letter, “Kaylee was found to have a deletion on the long arm of chromosome 1. The specific location of Kaylee’s deletion is written as 1q32.1.”

The document goes on to say “we were unable to find any reports of individuals found to have the exact same deletion as Kaylee.”

“It’s hard knowing that your child is the only one with this, and doctors don’t have answers,” Drake said.

Drake says her daughter constantly bleeds from her kidneys, suffers possible seizures, and her belly swells up and becomes as hard as a brick.

Doctors can only treat Kaylee’s condition in the short-term. As for the long-term, Drake hopes to get Kaylee to a hospital in Cleveland where she’s been told specialists might be able to help.

Drake, a single mother, says the constant hospital stays, doctor visits, travel expenses and other medical costs have taken a financial toll. She has launched a GoFundMe page to help raise the money she says is necessary.

“Look at the sweet little girl and know how loving she is and how much she deserves and how much of her childhood has been [taken] away,” Drake said.

“Please help my daughter.”

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