Travelers Rest mom raises awareness about rare condition

By Lori Bassett, Contributing Writer:

TRAVELERS REST, S.C. — Just like many other teenagers, Caleb Jones, 18, of Travelers Rest loves playing Xbox and watching movies. His dog, Koa is his best friend. But unlike most others his age, Caleb struggles with daily activities. Caleb has velocardiofacial syndrome, also known as 22q11.2 deletion syndrome.

One of several genetic disorders caused by an abnormality of chromosome 22, VCF syndrome patients are missing a section of the chromosome, also called a deletion, while others have a duplication, or extra section. Individuals affected with a 22q11.2 disorder may have a variety of medical problems including heart defects, problems fighting infection, cleft palate, and developmental delays or autism. There is tremendous variability between affected individuals.

“We became concerned about Caleb’s development when he was very young, and his delays were even more apparent when he started school,” said his mother, Jody Jones. “But, it wasn’t until Caleb had a seizure at age 15, that we finally found a diagnosis. We felt a huge burden lifted from our shoulders after the diagnosis, knowing that it wasn’t something he could help, and it wasn’t our fault as parents.”

Jody’s passion for raising awareness for this group of disorders has led her to coordinate the 6th annual ‘22q at the Zoo’ event at the Greenville Zoo on Sunday, May 22 from 1 p.m. - 4 p.m. This event is held at zoos across the world and is organized by the International 22q11.2 Foundation, a group dedicated to improving the quality of life for individuals affected by 22q11.2 syndromes. In 2015, over 10,000 people attended events in 115 cities across the globe.

22q at the Zoo provides a fun event for families to connect and learn more about the diagnosis while also enjoying the animals and participating in other activities including face painting and crafts. Caleb’s geneticist, Dr. Curtis Rogers of the Greenwood Genetic Center’s Greenville office, will also be providing a question and answer session with families.

“While most people have not heard of 22q11.2 syndromes, they are relatively common affecting around 1 in every 2,000 individuals,” said Dr. Rogers. “They can be inherited from a parent, but also often occur without a family history, and because the symptoms vary greatly between individuals, they can sometimes be tricky to diagnose.”

“Because of Caleb’s diagnosis, we know better what we’re facing, and it has brought our family together to work as a team,” said Jody. “We are all so excited about the event at the Greenville Zoo, to spend social time with other families who can relate to what we’ve experienced."

For more information about 22q at the Zoo, contact Jody Jones at This email address is being protected from spambots. You need JavaScript enabled to view it..