Sisters McKinna and Madison Rivers of Empire were both born with DiGeorge syndrome, which they inherited from their mother, Tracy Rivers.
According to the Mayo Clinic website, DiGeorge syndrome is caused by a defect in chromosome 22. It can cause a wide range of medical complications, including heart defects, autoimmune disorders, and learning or mental health problems.
Tracy Rivers lived most of her adult life with DiGeorge syndrome and never realized it. She was diagnosed at 28 after giving birth to her first child, McKinna.
“They tested my husband and I both, and they tested her the night she was born. That’s how we found out,” Rivers said.
McKinna had a shunt placed in her heart at eight days old and underwent open heart surgery at 17 months to repair a hole between her heart and lungs.
McKinna is now 14 and is scheduled to have an MRI soon to determine if another surgery is necessary for further repairs.
Her sister, 12-year-old Madison, has already had three surgeries — at 3 weeks, 3 years and most recently, in November. Madison also has a heart defect, although it is slightly different from McKinna’s.
Besides the issues with their heart, both girls have a learning disability and Madison also has a speech impairment.
They have not let DiGeorge syndrome hold them back, however. McKinna and Madison attend Sumiton Elementary/Middle School, and Madison has finally been cleared to play sports.
Once they reach adulthood, the girls will also have to make their own decision about whether to have children since they have a 50/50 chance of passing DiGeorge syndrome on to future generations.
For right now, they are interested in hearing from other local residents who empathize with their struggles.
“I just want to reach out to other people who may be going through the same thing because I’m sure there are. I want them to know there’s help out there and also to let God take control because it’s hard without God,” Tracy Rivers said.