A possible cure for a rare disease affecting one Heartland boy

ZALMA, MO (KFVS) - Bentley Northern is a fairly normal 7-year-old boy. He likes to play with his toys especially the electronic ones with a screen.

"Since the game pad's out, he's on it," said Anna Northern, Bentley's mom.

Bentley was born however with a neurodegenerative disease called PKAN, the symptoms can often be like Parkinson's disease.

But a few months ago they found out about a possible cure for the disease that could ultimately save Bentley's life. Dr. Susan Hayflick has been working on the cure for the past 15 years.

"She was waiting to be peer reviewed and then she was going to put the news out to the public," said Anna.

"We know it works in the mice," said Dr. Hayflick. "Does it work in the people?"

She discovered the gene that carries the disease. She started her research after meeting a family who three out of the four daughters suffer from PKAN. Now the possible cure is on it's way to human trials.

"It did everything we wanted it to do, it fixed the problem that the gene is specifically related to," she said. "We want to get to the Bentleys as quickly as possible, that's part of our goal."

But for now Bentley and his family are waiting for the drug to be processed. The money is being fund-raised by The Spoonbill Foundation. Once they raise their funds the drug will be made and then sent to kids like Bentley for testing. It's the hope his mother is looking for.

"To think, no hope to all the hope in the world really, I mean if it cured the mice and they think it's safe, it will probably cure our children."

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