Meet the Little Lobbyists

Introducing some awesome children with complex medical needs from around the country. Kids who love to play with toys, learn with friends, love their families, and bring light, joy, and laughter into the world. Below are their stories, told by those who love them, about the access to health care that makes their lives possible. If you'd like to share the story of your child with complex medical needs with us, please visit our story form.


January's Featured Little Lobbyist – Claire

Claire loves ice cream, fashion magazines, shoes, anything Disney, swimming, and laughing with her siblings. She has an incredible laugh. She loves books and has earned the nickname "the little Professor" at school.

Claire has a rare genetic disorder, microduplication of Chromosome 2p. Although there are only two known cases in the entire world, many of the resultant medical conditions are more common. Claire has a number of diagnoses, including autism, asthma, epilepsy, hypotonia, and intellectual disability among others.

Claire was born in 2006, before the ACA was law. Her family constantly worried she would reach her lifetime cap on care, or if they lost a job Claire would become uninsurable due to the multiple pre-existing conditions she was born with. Before the ACA, her family says they made all their professional and life decisions based on ensuring Claire's access to health insurance.

In an article for The Hill Claire's mom, Jamie says: "Our lawmakers are facing a choice: either reject Kavanaugh and defend the Affordable Care Act, or ignore the millions of Americans with pre-existing conditions — including my daughter — that they were elected to serve.”

Read more about Claire and her family's journey here.

But wait, there's more!

The above examples are just a tiny sample of the stories we've collected from hundreds of Little Lobbyists kids all over the country. Check back soon, because we are adding more stories all the time! We're also constantly looking for more stories to share. If you care for a dependent with complex medical needs and would like to make sure their concerns are represented by the policy makers whose job it is to protect them, we invite you to share their story with us here.