Delaynie is a 15-month-old little girl born with Joubert Syndrome. Joubert syndrome is a disorder of brain development that may affect many parts of the body. It is characterized by the absence or underdevelopment of the cerebellar vermis (a part of the brain that controls balance and coordination) and a malformed brain stem (connection between the brain and spinal cord).
Most infants with Joubert syndrome have weak muscle tone (hypotonia), which evolves into difficulty coordinating movements (ataxia) in early childhood. Affected children may have episodes of unusually fast or slow breathing (hyperpnea), which tends to occur shortly after birth. This may intensify with emotional stress, but progressively improves with age and usually disappears around 6 months of age. Various other abnormalities may also be present. Joubert syndrome may be caused by mutations in any of many genes.
Delaynie enjoys playing and interacting with her sister, Alexis, and brother, Cameron. She is such a blessing to her whole family and has already taught them so much. She is always entertaining others with her unique expressions and laughter.
Delaynie began receiving Apple’s services in late August 2017. She is currently on oxygen with heart and saturation monitoring and dietary supplements. She lives in Lubbock and travels to Dallas regularly for different appointments. Delaynie’s family utilizes Apple’s Lubbock office for her supplies, equipment and oxygen needs.
She continues to inspire others as she progresses and grows. Delaynie’s future is bright and includes improved communication and mobility.
