Aubrey has Joubert syndrome, which affects her cerebellum — her brainstem is malformed. It affects her muscle tone and ability to swallow, so all her food is pureed, and she’s at risk for aspiration and has cystic kidney disease. At three months old, she developed hypertension and is on high blood pressure medicine. She doesn’t talk or walk and can’t see well, so she’s learning sign language to communicate.
Despite all of this, Aubrey attends public school and has even played on an adapted baseball league and has done adaptive ballet. She relishes her time at Ryan House.
Aubrey likes interacting with the other kids at Ryan House, and her creativity increases when she’s there hanging out with her friends. She also loves the piano in the music room, dancing in the sensory room and rolling on the floor.
“She knows she is here to play and the fun has arrived, said Aubrey’s mother, Lindsay. “She discovers something new every visit. She plays dress up. She loves to play with the dollhouse. It’s become a second home for her. She is so comfortable. It’s like Disneyland for her.” She added that Aubrey doesn’t let her do her hair at home, but lets the nurses at Ryan House do it.
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