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AMARA

New York City, USA

Amara was born full term in January 2016. After 4 days at home from the hospital, she had to be readmitted for jaundice. Amara started experiencing developmental delays at 7-8 months of age and did not walk or crawl until she was 18 months old. Amara experienced a seizure when she was 34 months old and was non-verbal until age 4. While non-family members have a difficult time understanding her, she has made tremendous progress in her speech. 

Amara received her DESSH diagnosis when she was 24 months old after whole-exome sequence testing. She continues to be followed by a developmental pediatrician and neurologist. She receivess physical, occupational, and speech therapies weekly.

Amara is a beautiful and happy young girl with the best attitude. She works so hard for everything she achieves. She is a source of pride and joy for her whole family and lives her best life every day! She loves to watch cartoons (especially Paw Patrol!) and spend time with her cousins. She has an incredible amount of energy and loves to be around people. While she interacts mostly with adults, she loves to be around kids her own age. She likes playing in the park on nice days and baking with her sister on rainy ones!