Meet Nevaeh: 2020 Family Advocacy Week Champion
Nevaeh is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Nevaeh and her family will share information about her health journey, Connecticut Children’s Medical Center’s role in providing Nevaeh with necessary health care services, and why the public and our elected officials must invest in the future of kids like Nevaeh.
Prior to birth, an ultrasound determined Nevaeh had a gene abnormality and required immediate special care at birth.
She was diagnosed with Beckwith-Wiedemann Syndrome (BWS), an overgrowth syndrome, which is an abnormality in chromosome 11 genes.
Nevaeh would require 10 weeks in the NICU and multiple procedures and surgeries due to her condition. BWS varies and can affect the entire body, meaning multiple tests were required to determine Nevaeh’s health.
“This has been very stressful for the family,” says Kristin, Nevaeh’s mother.
She still requires regular diagnostic imaging and bloodwork, along with frequent follow-ups including cancer screenings and developmental evaluation.
Today, Nevaeh is doing great and keeping up with her peers. She’s typically the tallest in her class as she’s going into second grade. Nevaeh is taking dance and gymnastic lessons, plays soccer, and loves being a girl scout.