Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"

BOS Patient Stories

Bohring-Opitz Syndrome Patient Stories


Campbell Doty

Campbell was born on January 17, 2006 to Brian and Michelle Doty.  She had a bilateral cleft lip and palate that was undetected on ultrasound.  She was full term and stayed in the hospital for five days for feeding issues related to her cleft palate.  At that point, the doctors felt it was an isolated case since she appeared healthy otherwise.  Initial head and heart ultrasounds showed no abnormalities.

When she was three weeks old, she contracted respiratory syncytial virus (RSV) and was hospitalized for sixteen days at the University of Kentucky Children’s Hospital.  She developed aspiration pneumonia and had to be on a ventilator for five days.

During her stay, a geneticist was called in to determine if her craniofacial abnormalities and difficulty fighting RSV were part of a genetic syndrome rather than an isolated case of cleft lip and palate.  That began a ten-year search for a diagnosis she finally received in October of 2016 of Bohring-Opitz Syndrome.

Campbell exhibits many of the physical features known in BOS such as a depressed and wide nasal bridge, upslanting palpebral fissures (opening between eyelids), proprosis (bulging eyes) and hypertrichosis (excessive hair growth).  She has global developmental delay, sleep apnea, osteoporosis (low bone density), and has a g-tube for feeding.

The area she struggles with most is seizures. In 2012, Campbell had a prolonged seizure (status epilepticus) where she suffered hypoxic brain damage after undergoing CPR for 20 minutes.  Some of her current symptoms and level of function are a result of the hypoxia versus BOS.  For example, she was hypotonic (low muscle tone) prior to the seizure and now is hypertonic (high muscle tone).  She also received a tracheostomy due to her airway collapsing when they attempted to wean her off the ventilator.

She adores her older brother Matthew, loves University of Kentucky basketball, music, shopping and spending time with her cousin and best friend, Bekah.  She uses a dynavox communication system and switches to communicate.  Please follow our journey at and also on Facebook and Instagram.  Email