Meet Dylan: 2022 Family Advocacy Day Champion

Dylan is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Dylan and her family will discuss her health journey, Wolfson Children’s Hospital’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Dylan.

Dylan was diagnosed with gastroschisis, a rare defect where the intestine protrudes through the right side of the umbilical cord, during a prenatal ultrasound. Dylan was born with her small intestine, large intestine, stomach, kidney and liver outside of her body. 

Dylan has had multiple surgeries and inpatient stays to correct this defect. 

“Dylan still has some gastrointestinal issues,” says Ashley, Dylan’s mother. “She’s had food allergies most of her life. If she gets sick, we have to go immediately to the ER because we don’t know if it’s a traditional flu, or something more life-threatening like intussusception or malrotation of the intestines.”

Today, at 14 years old, she is stable. Dylan sees the gastroenterology team at Nemours Children’s Health, Jacksonville and Wolfson Children’s for routine imaging tests, blood work, ultrasounds and medication management.

She was also diagnosed with general anxiety disorder and ADHD.  She is currently receiving therapy and learning skills and continues to thrive.

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published this page in Blog 2022-06-07 08:38:03 -0400