Emma

Age 9, North Carolina

Meet Emma. Emma enjoys dancing to Elmo videos, playing with balls, and exploring outside in the grass. Emma is a twin born at 28 weeks, one minute older than her sister, Sara Bean. Emma lives with bilateral vocal cord paralysis (BVCP), global developmental delay, severe Reflux/GERD, and pulmonary disease from prolonged intubation. Emma has never taken an unassisted breath. She needs daily nebulizer medications and has a tracheostomy to help her breathe. She uses a g-tube for nutrition, therapies to gain skills and strength, and needs 24-hour care to stay safe. Home and community-based services (HCBS), including private duty nursing (PDN) mean that she can grow up and thrive with her family; in her home.

Emma’s mom, Stacy says: “Our private insurance will not cover Emma's in home nursing, a majority of her general and respiratory supplies and the frequent therapies she needs to make progress. Medicaid is covering that difference, which would be financially insurmountable if she were to lose it. The ACA and Medicaid mean we’re not drowning in debt to provide basic, life-sustaining care for my child.”

Submitted by Emma’s mom, Stacy. Read more about Emma in this Op-Ed written by her mom, "Hold Your Breath."