Ill student’s family copes, thrives
In many ways, Nevaeh
Myers is a typical
9-year-old who loves coloring, reading and riding around her Tequesta neighborhood on her scooter.
But a sliver missing from her 22nd chromosome wreaked havoc on her heart when she was a baby. Her pediatrician detected a heart murmur at her 2-month-old checkup, and by the time she was 8 months old, she was having surgery to repair the hole in the wall between the two lower chambers of the heart, parents Isabel and Fred Myers said.
Fast forward to today, and the Allamanda Elementary fourth-grader has the all-clear to jump rope, hula hoop and play hide and seek. She raised more than $330 for the American Heart Association’s Jump Rope for Heart event at the school’s field day March 16.
Doctors diagnosed her with DiGeorge Syndrome, the rare disorder of the missing chromosome segment that caused her heart problems.
They used a genetic mapping test to find out about the chromosome disorder. They also determined she had a cleft palate and quickly repaired it.
“It was the first time I heard ‘Mommy.’ She was 5 1/2 years old,” Isabel Myers said.
Nevaeh is talkative these days and gets heart checkups every couple of years. Not every child with the same syndrome as Nevaeh has a heart problem, but many do. Her parents feel fortunate that she doesn’t have a more serious condition. Other effects of her syndrome include developmental delays, hearing loss and kidney abnormalities. Usually when a new issue pops up, it’s because of the missing chromosome piece, Fred Myers said.
The family tries to participate in Jump Rope for Heart every year. Because Nevaeh’s syndrome is so rare, the event to raise money and awareness for heart issues is an easier inroad to talk to people about her chromosomal disorder.
Most of the money she raised came from her parents’ friends supporting her on social media, Isabel Myers said.
“We always say Nevaeh is our tour guide. She takes us on this tour, but we wouldn’t change a thing.”