Meet Charlie: 2018 Family Advocacy Day Champion
Charlie is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Charlie will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
More than likely, it was mother’s intuition that saved Charlie’s life. Born in August 2015, Charlie’s mother, Shelby, felt like something just wasn’t right with her infant son.
At two-months-old Charlie was diagnosed with two congenital heart conditions — mitral stenosis and mitral regurgitation — and pulmonary hypertension, a type of high blood pressure that affects the arteries 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. One surgery was to repair a paravalvular leak, a rare complication from surgery to replace the mitral and aortic valves never seen in my hospital. He will likely undergo surgeries throughout his life to accommodate his physical growth.
Nearly three-years-old, Charlie continues to have ongoing health issues with his asthma and airway malacia which is marked by chronic gasping and coughing, and reoccurring respiratory infections. Fortunately Charlie remains under the care of a team doctors at Children’s Minnesota where he sees a pulmonologist, an immunologist, a hematologist, an ENT specialist and gastroenterologist.
While the hospital has been a loving environment, Charlie suffers from anxiety attributed to the many hospitalizations he endured in infancy but is working with a psychologist to overcome his issues. Charlie will likely undergo surgeries throughout his life to accommodate his physical growth.
Despite all that Charlie has been through, he remains a happy, crazy, carefree little boy. Determined and outgoing, he loves to play baseball and hockey. In the fall, Charlie has dance class and preschool to look forward to. He’s especially excited to make new friends.
Join us in welcoming Charlie to 2018 Family Advocacy Day!