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Meet Alexandra

Much of Alexandra’s free time is spent watching cooking shows on the Food Network and perusing cookbooks for new recipes. She had the opportunity to meet one of her favorite food stars, Alton Brown and attended two cooking camps last year. Her inability to eat food has not deterred her. Alexandra aspires to be a chef one day.

In April 1999, Alexandra was born with spina bifida and Arnold Chiari Malformation Type II, which affects both the brain and spine. During the first few weeks of her life she had several surgeries. She spent six months at the University of Maryland Medical Center and another two months at Mt. Washington Pediatric Hospital, where her parents learned to care for her.

Now, Alexandra is 15 years old and getting ready to start high school. Her mother, Marisa said Alexandra has always been in typical classrooms with children in school. “She is willing to work hard and set high goals for herself,” Marisa said. Alexandra’s current goal is to get straight A’s during her four years in high school.

Alexandra cannot walk, speak or eat. She uses an electronic wheelchair to get around. An eye tracking device helps her communicate with others and complete her school assignments. She receives nutrients through a G-tube.

The Maryland Medicaid Model Waiver program provides Alexandra with the necessary medical equipment and nursing assistance she needs on a daily basis. Marisa is thankful for the program and Alexandra’s care coordinator at The Coordinating Center. She says the coordinator has been a great support system that helps connect the family to resources and provides support during meetings with physicians. “It is helpful to know that someone has your back in the medical community,” Marisa said. “In this life with Alexandra, that means a lot.”