Kelly Whitten, who was born with Down syndrome, received heart surgery when she was just 4 months old. The surgery fixed a hole in her heart caused by an atrioventricular canal defect. As Kelly got older, everything seemed to be going well.
“She was thriving,” said Connie Whitten, Kelly’s mom. “I even went back to teaching at a Montessori school and was able to take her to work with me.”
About a year after her heart surgery, the Whitten family was stunned to learn that Kelly had another rare genetic disorder, autosomal recessive polycystic kidney disease. The Whittens were told their daughter would need a kidney transplant by the age of 10. However, Kelly’s kidneys and liver began failing when she was 5 years old.