Fourteen-year old Charlie loves eating out and road trips with his family. He also has a serious and rare disease called autoimmune encephalitis (AE). It causes the body’s immune system to attack the brain. Charlie lost his ability to speak, write and draw.
His mother, Holly, got help from Children’s National Hospital in 2015 after learning about neurologist Dr. Elizabeth Wells, a leader in treating AE. “Charlie’s team at Children’s National does not look for the easiest fix,” Holly says. “They are aggressive about solutions and always want to know details about how he is doing.”
Charlie’s care team helped him regain skills and get back to being a kid. They also supported his family along the way. “Program coordinator Alyssa Doslea is a master at dealing with complex health insurance issues and managing prescriptions and blood work orders,” Holly says. “She visits Charlie and her other patients when they’re in the clinic or hospitalized and she is starting a parent support group for families facing this condition.”
Last spring Charlie was in bad shape, Holly says. He missed a lot of school and developed a large bald spot. “There were times he would barely leave his bedroom.” Holly says. His team cared about the nuances of his symptoms and always made his experience as easy as pleasant as possible. A change in medication helped him feel better and his hair grew back.
We appreciate that they are so keyed in to him being comfortable,” Holly says. “He is very happy and hasn’t missed a day of school since.”
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