FAD Alum Newsletter -- Advocacy Continues

Charlie is a 3-year-old little boy filled with endless amounts of energy, laughter and silly comments. Under his sweet smile, he holds a long list of diagnoses and requires eight specialists for his conditions.

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 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 didn’t end after that—he has had frequent ongoing hospitalizations. Most recently, this brave boy spent Thanksgiving in the hospital for atrial flutters. He is currently waiting to schedule his next open-heart surgery soon.

Charlie’s medical needs often take priority in his family. Typically, he has at least one appointment a week. His family has learned to “expect the unexpected.”. The daily ins and outs of raising a child with medical complexity can be stressful on his parents—they often miss holidays, family events, work and other plans due to hospitalizations, illness or just attempts to minimize Charlie’s exposure to germs. Charlie’s big sister, Mya, often deals with anxiety as a result of his medical complexities. She has an impressive understanding of his care, diagnoses and the reality of his life.

Even though Charlie has private insurance, he is also covered by Medicaid. Having this 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 able to continue to provide both their children a warm and happy home, reassured that they don’t have to compromise his care because of medical expenses.

Last June, 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 to keep Medicaid strong and pass the ACE Kids Act. In October, just prior to the election, his mom also had the opportunity to speak to the state’s gubernatorial candidates on behalf of Minnesota’s children. During both “Conversations with the Candidates” sessions, the room sat quiet while she shared their pain, joy and gratitude for Medicaid and the lifesaving care they received at Children’s Minnesota. She left those days feeling heard and received endless thanks and compliments from those in attendance.

Because Children’s Minnesota has given so much to Charlie and his family, his mother decided to give back as a member of the Families as Partners Program and the Family Advisory Council. She served in various roles as a family presenter to share their story with influential groups. This month, she’ll start her new role on the Family Advisory Council as the Vice Chair and intends to enjoy every moment of it!


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