Past Champion Children

Sotara Barnaby, a 10-year-old from Pablo, is the happiest girl you’ll ever meet, even though she suffers from a rare genetic condition called Rubinstein-Taybi syndrome.

The Shodair genetics team first evaluated Sotara when she was 6 years old because of developmental delays and short stature. They charted Sotara’s growth and development over the next three years and, as is the case with many genetic conditions, the features of Rubinstein-Taybi became more recognizable over time. Sotara was diagnosed in 2010 at age 9 with Rubinstein-Taybi. The diagnosis gave her family an explanation and a genetic basis for Sotara’s growth pattern and delays. The genetics team at Shodair also provided critical medical and developmental management guidance.

It has been estimated that approximately 1 out of 125,000 people has Rubinstein-Taybi syndrome, a condition that occurs with equal frequency in both males and females. Symptoms and signs of the condition vary with each individual and can include heart and kidney defects, eye abnormalities, and dental problems. People with this condition also have an increased risk of developing cancerous and noncancerous tumors. There is also an increased risk of leukemia.