Naomi

Naomi

Age 3, North Carolina

Meet Naomi. Naomi is willful, sassy, strong and funny. She can do 48-piece puzzles, loves singing, dancing, and beautiful shoes. She fearlessly rides all the thrill rides at Disney World she can. Naomi was born with half a heart, called hypoplastic left heart syndrome. Naomi spent her first six months in the ICU and received a new heart during that time. Every few months, Naomi has to be seen by her transplant team for an echocardiogram, EKG, labwork, and a clinic visit. She is followed by a pulmonologist for respiratory issues, nephrologist for kidney issues, gastroenterology for feeding tube use, and infectious disease. To protect her heart, Naomi is immunosuppressed and takes many medications daily. When she gets sick, she often needs hospitalization to fight infections. 

Naomi’s mom Bethany says: "All of Naomi's medical issues were pre-existing. Without protection from the ACA, Naomi would be denied for health insurance, full stop. And the ACA's prevention of lifetime caps on care is what allows Naomi to continue to thrive. By the time she turned one year old, she had amassed over $2 million worth of medical care. The ACA is the dam between our family and the crushing tide of medical debt. Without it, Naomi will die for lack of necessary, specialized care. Naomi's dad and I both work full-time jobs to cover all of Naomi's bills, and to support Naomi's older sister, who has autism. Children with cardiac challenges often show neurological differences. Naomi has executive functioning issues and anxiety/PTSD, which impact her ability to learn and build relationships with her peers. She qualified for an IEP, and now Naomi receives weekly services at her school. She is learning strategies to stay focused and organized, and ways to calm herself, and how to interact socially. Without the therapy and education Naomi receives, she would not thrive as she has. Having the protection from IDEA and FAPE means Naomi can receive the help she needs to truly soar.”

Submitted by Bethany, Naomi’s mom.