On May 17, 2011, Lilliana Dennis was born to Rhonda and Russell Dennis. But just a few hours later she was taken for testing that confirmed she was born with Trisomy 18, a chromosomal anomaly that results in an extra chromosome. More than 90% of babies born with Trisomy 18 don’t live past the first year. Because of the high fatality rate, most doctors will not offer any treatment options.

After researching the condition and finding people who were living with it, Rhonda and Russell decided to advocate for their daughter’s care. Lilliana had been born with a large hole in her heart that eventually would affect her longevity. After seeing doctors who refused to do heart surgery, they met Dr. Sanjay Parikh, a pediatric cardiologist at St.Vincent Health in Indianapolis.

Dr. Parikh agreed to do whatever was necessary to ensure Lilliana had the surgery, but he had trouble obtaining consent from all the doctors who would be involved in her care. Rhonda and Russell went before the hospital’s ethics committee to plead Lilliana’s case. The committee gave their consent.

At the time of filming Lilliana just celebrated her first birthday and was improving every day. Her care requires a lot of hard work and patience, but Rhonda and Russell can’t imagine life without their baby girl. There’s no question that a bias against Trisomy 18 exists within the medical community, but hopefully stories like Lilliana’s will pave the way for change.