Josephine

Age 4, 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 also has Postprandial Hypoglycemia from having a gtube with a nissen. For the first 3 years of her life she was ventilator dependent and she had a tracheostomy until July of this year, 2020. The tracheostomy and ventilator were critical in helping her grow stronger, larger, better lungs. Today she uses her gtube for fluids, and medications. She's globally delayed, has low tone, and needs orthotics. With hours and hours of therapy sessions and follow-up on  home she now walks, climbs, dances and likes to play outside more than anything. She speaks beautifully through the efforts of multiple speech therapists to teach her and her parents how to support her use of a speaking device. Through her Accent 800 she can answer questions in class, tell you what she wants to do, control our Alexis for music and tell you what she wants to eat. 

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.”