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.
September'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.
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 Emma. Emma enjoys playing with balls, blocks and exploring outside in the grass.
Meet Aadi. Aadi was born 2 months premature with cerebral palsy.
Meet Claire. She loves her dogs and meeting people. A social butterfly with no fear. Lots of hugging for everyone.
Meet Simon. He loves music, Disney movies, and playing Mario Kart with his big sister.
Meet Gabbie. She loves animals, going to school, chatting with friends, and singing in choir.
Meet Jack. He loves Mickey Mouse, watching bubbles, and being read books.
Meet Myka. She loves the Girl Scouts, ice skating, playing with her friends.
Meet Jack. He loves all things science related, especially weather and storms
Meet Caroline. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast.
Meet Teddy. He loves music and reading books – front to back!
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 Ayla. She’s a strong, happy, and determined little girl whose smile just melts your heart.
Meet Elliott. He likes to help make dinner by trying everything.
Meet Josephine. She loves books, big trucks, a great playlist, and bubbles.
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 Gigi. She loves to play outside, draw with sidewalk chalk, and ride her tricycle.
Meet Franklin. Every Sunday he likes to sit in the front row of church so he can shake everyone’s hand.
Meet Ethan. He loves his family, fireflies, and gathering stick bouquets for his mom on hikes.
Meet Dallas. He loves music videos, camp, and baseball.
Meet Mila & Felo, miracle twins and best friends who’ve come a long way since their early start in the NICU.
Meet Ryan. He’s smart, sweet, funny, and social media savvy.
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.