Four-year-old Roya Kebriaei was featured on this week’s “Kylie’s Kids” segment on WCCO-TV [WATCH]. Roya was born with 22q, a genetic syndrome also known as velocardiofacial and DiGeorge syndrome, which can affect every system in the body and cause a wide range of recognizable health and developmental problems.
Roya visits eight specialists on a regular basis for everything from speech, physical and occupational therapies. Though little known in some circles, 22q is nearly as common as Down syndrome, affecting 1 in 2,000-4,000 children born, 1 in 68 kids born with heart disease and 5 percent to 8 percent of children with cleft palate.
The chromosome deletion syndrome is the reason for 22q Worldwide Awareness Day, which will be recognized in the Twin Cities with 22q at the Zoo, an event from 11 a.m. to 3 p.m. Sunday at the Minnesota Zoo (13000 Zoo Boulevard in Apple Valley). The sixth annual worldwide event takes place each year on the third Sunday in May and includes a kids’ party, networking for parents and a guest speaker.
Roya’s parents, Meysam Kebriaei, MD, Children’s Minnesota pediatric neurosurgeon; and Amy Kebriaei, DDS, established a local 22q support group made up of teams from Children’s Minnesota, Gillette and University of Minnesota Masonic children’s hospitals.
RSVP to the event by contacting Amy Kebriaei at (218) 349-4050 or [email protected]. Go to 22q.org for more information and to order the official red 22q at the Zoo T-shirt. Proceeds benefit the International 22q Foundation.