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.
Meet Xiomara. After spending the first five months of her life in the hospital, Xiomara is eager to explore the outside world.
Meet Timmy. Timmy is a newly minted kindergarten graduate who loves robots and pirates, plays on a local soccer team, and dreams of growing up to become a police officer, firefighter, “ambulance man,” garbage collector, or robot repairman.
Meet Anna. She is a typical 5 year old in many ways. She loves to play with her brothers. She loves Play-Doh and to play with her dolls. She is very into princesses right now. Anna loves to sing along to songs from Disney movies.
Meet Pierce. Pierce is three years old. He loves playing with his light up train and going to the aquarium.
Meet Charlie. She is five years old and loves playing outdoors, live music, things with numbers, and anything with animals.
Meet Aadi. Aadi was born 2 months premature with cerebral palsy.
Meet Emma. Emma enjoys playing with balls, blocks and exploring outside in the grass.
Meet Simon. He loves music, Disney movies, and playing Mario Kart with his big sister.
Meet Claire. She loves her dogs and meeting people. A social butterfly with no fear. Lots of hugging for everyone.
Meet Jack. He loves all things science related, especially weather and storms
Meet Myka. She loves the Girl Scouts, ice skating, playing with her friends.
Meet Jack. He loves Mickey Mouse, watching bubbles, and being read books.
Meet Caroline. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast.
Meet Victor. He loves going to school with his friends and playing Miracle League Baseball on the weekends.
Meet Louisa, she loves playing on the swings, going for wagon rides with her brother, reading stories, playing games, listening to music, and everything other kids her age like to do!
Meet Ethan. He loves piano, horseback riding, going to church, and spending time with his family and friends.
Meet Esther. Estie sings in the choir, is in the chess club, and is a straight A student. She speaks to others about what it’s like living with her disability and hopes to be a motivational speaker some day.
Meet Louie. He’s a bright, funny, sweet kid who's always quick with a hug.
Meet Abigail. She loves music and dancing. She loves her big sister and her big brother. She is the most authentic person you will ever meet, never afraid to just be herself.
Meet Owen. Owen is a really smart kid who loves science, books, mystery shows on TV, trips to New York City's great museums and especially strolls through the Brooklyn Botanic Garden.
Meet Liam. Liam loves to ride his bike and hang out with his mom and dad watching the SF Giants play!
Meet Ethan. He loves his family, fireflies, and gathering stick bouquets for his mom on hikes.
Meet Jillian. When she grows up, she wants to be a doctor, nurse, astronaut, teacher, music therapist, and work in the Ronald McDonald house.
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.