Local girl makes her voice heard in Washington

BERNE, N.Y. (NEWS10) – A little girl with a rare chronic disease is taking her fight to Washington.

Emma Detlefsen, 8, goes to Berne-Knox-Westerlo School District and while she’s only in the third grade. She has some big plans to help more people like her.

Emma was born with something called primary lymphedema which means her lymph system doesn’t flush out fluids like it would for a healthy person.

As a result, her limbs swell up and has to use compression garments to help keep the swelling down.

Those garments can cost upwards of $1,000 and insurance doesn’t always cover all the costs.

Emma is going to Washington to push for the Lymphedema treatment act which will give her and other patients what they need to maintain they’re health.

“We spend every second worrying about this disease. It affects every decision we make,” Tiffany Detlefsen, Emma’s mom, said.

“The book has pictures to tell you about the struggles and what my life is about,” Emma said.

Emma even wrote a book to explain her illness. More than 19,000 people in New York suffer from the illness.

She’s been to Washington before and her mother says the bill has support in New York. Now they just need to get the rest of the country on board.

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