2016 Speak Now For Kids Family Advocacy Day Hero: Emma
Emma and her twin brother were born nine weeks premature. Shortly after birth, Emma was diagnosed with grade 3 laryngeal cleft. The gap between Emma’s larynx and esophagus was surgically repaired when she was 3-days-old to prevent eating and breathing problems from developing. When she was 1-month-old, Emma was transferred to Boston Children’s Hospital because she required specialized care beyond the capacity of the hospital where Emma was born. At Boston Children’s, Emma has undergone several surgical procedures to repair her upper airway disorder and frequent aspiration. Additionally, Emma receives care at Boston Children’s for her chronic lung disease and immunodeficiency, which was later diagnosed. Emma is seen by a multitude of specialists and clinics, and she has received years of outpatient therapy from augmentative communication and voice therapy. She can count 10 different specialists as a part of her care team.
Today, Emma is a happy and healthy 8-year-old. Amazingly, she now only visits Boston Children’s monthly to receive an infusion and to give her favorite hospital staff a big hug. With the assistance of a G tube, pulse ox machine, and CPAP as well as supportive school and home nurses, Emma is able to participate fully in school and family activities. Emma’s family is incredibly proud of how hard Emma fights each day and feels forever indebted to Boston Children’s for the care she receives.