Henley from European Union

Henley was born in June 2016 in a depressive condition with an intra-amniotic infection that required intensive treatment. She has been diagnosed with internal hydrocephalus (no VP shunt reportedly necessary), brain abnormalities (reduction deformities of the brain), quadriparesis, left-sided hemiparesis, and symptomatic epilepsy. Henley’s development is significantly delayed. Preliminary genetic testing was reportedly normal; however, additional genetic analysis has been recommended in the hopes of finding a unifying diagnosis for her. Update October 2021: Henley’s medical status and overall development remain virtually unchanged from her last reports. She continues to function at the level of an older infant, being able to sit and crawl independently and to walk with support but relying on adults’ help for all tasks of daily living. She eats purees, sleeps well, and is not potty-trained. Henley reacts to auditory and visual stimuli and likes exploring her environment in a tactile manner. She is nonverbal, although she communicates through well-differentiated emotional responses and distinguishes between strangers and familiar people. She does not seem to understand what is said to her. Henley likes playing with musical toys, and rattles and enjoys rustling materials. Tearing paper is a favorite activity. 2019: Henley sits independently, explores her environment by crawling, and while holding a fixed support, can stand and take several sideways steps. She fixes her gaze on a face or toy, can follow a moving object for a short while with her eyes, and responds to sounds, often seeking out the source. Henley grabs and manipulates toys, mainly with her right hand, and especially enjoys those that play music or make noise. She likes physical contact and will reach out a hand to touch and examine a child or adult sitting nearby. Henley clearly expresses emotions, crying when upset, and laughing when adults tease or play with her. She does not understand or imitate speech but vocalizes vowel sounds and sometimes syllables. She is spoon-fed and sleeps well. Henley is fully dependent on her caregivers.