Meet Jaylyn: 2017 Speak Now for Kids Family Advocacy Day Hero

Just hours after she was born, Jaylyn was diagnosed with trachea esophageal fistula and esophageal atresia (EA-TF), a condition resulting from abnormal development before birth of the tube that carries food from the mouth to the stomach. With this confirmed, the newborn was immediately transferred to a specialized neonatal intensive care unit (NICU), which was equipped to care for a newborn with her condition.

“We were scared to death, in complete shock and heartbroken. We could hardly pronounce 'Trachea Esophageal Fistula and Esophageal Atresia' and had never heard of it before,” said Jaylyn’s mom, Crystal. “We couldn't imagine how a baby could be born without an esophagus, much less survive without one.”

Crystal described the months that followed as being a “very dark, scary time for us,” as the family was learning about EA-TF and adjusting to their new life. Though they have private insurance, Medicaid has been essential in providing assistance in out of pocket expenses not normally covered.

“We can’t put Jaylin in a regular child care center, so a nurse is the key to a positive balance for our family,” said Crystal.

Now 7 years old, Jaylyn doesn’t let her medical conditions define her; she knows they make her unique. Her conditions have inspired her to want to pursue a career in Neonatology one day so she can “help babies just like her get better.” Her strength, courage and continuous drive are values that make Jaylyn who she is: a hero.

Help us welcome Jaylyn to Washington, D.C.!