Team members at Aspire Kids are spotlighting Angelman syndrome.
Many of the children Aspire Kids serves have rare diagnoses that impact the child’s development as well as his or her family. Each quarter Aspire Kids plans to spread awareness about one of these diagnoses and the organization(s) that support impacted children and families. Aspire team members will be donating to the organization and will provide an opportunity for you to donate, too. This quarter, we are highlighting Anna through the eyes of her grandfather, Don.
Anna, who is 8 years old, has Angelman syndrome. Features of the syndrome include developmental delay, absence of speech, seizures and problems of sleep, motion and balance. People with Angelman syndrome typically are happy and excitable with frequent smiling and laughter. Anna is no exception.
Anna’s mother became concerned when Anna did not meet developmental milestones by age one. A neurologist sent blood tests to the Mayo Clinic where a misdiagnosis of Prader-Willi syndrome was made. Six months later, after Anna had experienced a few minor absence seizures, it was determined that the first diagnosis was in error and that, in fact, she had Angelman syndrome.
“Even though you can’t talk or walk we still like you just the way you are.” – Anna’s classmates
At age 15 months, Anna was evaluated by the Early Intervention program and began to receive weekly therapy at home: occupational, speech, physical and developmental. The therapies continued at home until Anna entered Early Childhood Education at age three. She attends school ½ day in a special needs classroom and ½ day with typically learning 2nd graders. She rides the short distance to school in a special-needs-equipped bus and has a one-on-one aide throughout the day. Anna’s classmates love her and she looks forward to school each day. She recently brought home a hand-made card that said, “Even though you can’t talk or walk we still like you just the way you are.” Another classmate wrote, “Just because you go in a wheelchair I still love you!”
In early 2013 Anna began weekly physical therapy at Aspire to augment that received at school. She has enjoyed her time each week and it has helped her progress. Anna can walk with hand-held assistance and uses a “KidWalk” walker. She has no words and probably will never have more than a half-dozen or so. She is progressing cognitively and has a winning personality. In short, Anna is the sunshine in our lives.