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.


August's Featured Little Lobbyist – Louisa

Louisa loves playing on the swing set and going for wagon rides with her brother, reading stories, playing games, listening to music, and everything other kids her age like to do!

Louisa has Hypoplastic Left Heart Syndrome (missing 2 chambers of heart), tracheomalsia, and gaestroparesis. She is awaiting a 3rd stage heart surgery, had a tracheotomy, and is fully tube fed. She uses a pediatric medical walker to help her get around.

Louisa's mom, Andrea says: "ALL of these conditions and the necessary medications and medical supplies are beyond what both my husband and I can ever earn and save. It is our fear that an insurance company could tell us she is not insurable, or has met a maximum.

If pre-existing conditions weren’t covered, our children would die. If you allow insurers to have a limit for lifetime, our babies would have hit it at 6 months old.”

Read more about Louisa 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.