Lily was born with VACTERL association, an acronym that represents multiple birth defects that affects several areas of the body. Each letter in ‘VACTERL’ stands for a different defect and to be diagnosed with this condition, a patient needs to present with three of the seven letters. Lily has all seven.  

As soon as she was born, Lily needed emergency surgery to help her breathe and swallow, and just three months later needed another surgery to repair her anorectal malformation. Additional surgeries Lily has undergone with her orthopedics team have vastly improved her quality of life. Julie Samora, MD, PhD, a specialist in pediatric hand and upper extremities at Nationwide Children's Hospital, performed a dual pollicization, a procedure in which thumbs are created from an existing finger on each hand. Lily’s surgery went on to win an award and video of the surgery is utilized by other surgeons across the globe to better understand how to perform this complicated procedure.  

Lily also faced issues with her spine. When she was born, doctors told her parents she may never sit, stand, or walk because of a diagnosis of sacral agenesis, a congenital disorder in which the lower part of her spine is missing, along with other vertebral anomalies, such as scoliosis. But when Lily showed interest in walking and standing, the Myelomeningocele Clinic set her up with Behavioral Pediatrics, Neurosurgery, Urology, Orthopedics, Physical Medicine and Rehabilitation, Neuropsychology and Genetics to get her mobile. As a result, Lily has discovered a passion for dance.  

Recently, Lily has been spending a lot of time with the Center for Colorectal and Pelvic Reconstruction, helping her become more independent and even ready to start school.