Advocacy Continues: Charlie's Story

Charlie is a 4-year-old boy filled with endless amounts of energy, laughter and famous one-liners. He likes to tell stories in the most dramatic manner possible, while flashing a smile that can melt your heart. But under his upbeat personality, he holds a long list of diagnoses and requires eight specialists to care for his health conditions.

At two months old, Charlie was diagnosed with two congenital heart conditions—mitral stenosis and mitral regurgitation—as well as pulmonary hypertension, a type of high blood pressure that affects the arteries to the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open-heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.

Charlie’s stays at Children’s Minnesota didn’t end after that—he has had frequent ongoing hospitalizations. Charlie now receives weekly Hizentra infusions to get stronger and fight back against his illnesses. Even during the most painful procedures, he likes to high-five his stepdad and brag in his most serious face, “I didn’t even cry!” Charlie is currently waiting for his 4th ear surgery in March.

Even though Charlie has private insurance, he is also covered by Medicaid. Having Medicaid coverage for his medications, hospitalizations, miles travelled to and from appointments, and other miscellaneous expenses has made such a difference for his parents—they’re reassured that they don’t have to compromise his care because of medical expenses.

Two years ago, Charlie and his family took their advocacy on the road, travelling to Washington, D.C., and representing Children’s Minnesota at 2018 Speak Now for Kids’ Family Advocacy Day. They helped advocate to Congress about keeping Medicaid strong and passing the ACE Kids Act.

Because Children’s Minnesota has given so much to Charlie and his family, his mother, Shelby, decided to give back by becoming the Vice Chair of the Family Advisory Council.

“One of my biggest accomplishments is forming the Cardiovascular Experience Team to improve hospital stays for kids with heart defects,” Shelby shares. She is also participating in the Families as Faculty program to help medical students and residents understand the family’s perspective of caring for their sick kids.

“Advocating for Charlie has always been my top priority. I’m honored to work with peers and hospital staff and use my voice to improve care for all kids like him.”

Today, Charlie is excelling in his second year of pre-school. He is a superstar in tee ball and loves to play Legos with his sister and brothers—he is often referred to as the “ring-leader” of the pack.