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Josephine

Age 2, Virginia

Meet Josephine. She could sit all day and have stories read to her. She loves puzzles, big trucks, swings, bubbles, a great playlist, and getting into trouble. Every day she grows into a more inquisitive and vibrant human being.

Josephine was born at 24 weeks gestation. She weighed 1lb 12oz and was 12 inches long. She has Chronic Lung Disease, Pulmonary Hypertension, and GERD as a result of extreme prematurity and low birth weight. She has a tracheostomy and a ventilator to support her developing lungs. She uses a g-tube for nutrition, fluids, and medications. She's globally delayed, has low tone, and needs orthotics, a gate trainer, and a wheelchair for school this fall. She's had hours and hours of physical therapy to work on basic activities, like sitting and walking.

Josephine's mom says she can do almost anything. We agree -- Jo has been visiting the Capitol with the Little Lobbyists since she was barely a year old. She shares her vibrant smile and love of bubbles with legislators from all over the country, reminding them that no matter what medical needs a kid might have, at the end of the day - our kids are just kids and they just want a chance to grow up.

In an interview with abc news "Tales from patients who stand to lose a lot from GOP health bill"  Jo's mom Samantha said:

“I never thought in a million years I would be someone who needs Medicaid. I think what people don’t realize is what the actual cost of healthcare is … If our family was just a healthy family and were talking about an occasional cold, our insurance would be fine. But when you start talking about $26,000 a month, unless you are wealthy, you don’t have that money.”