Son’s Rare Eye Condition Prompts Parents to Become Inn Supporters

Sarah Allen and Tim Powderly of Arlington, Virginia, know all too well the stress and anxiety of having an ill child. Their son Evan, 7, was born with a rare eye condition called a coloboma, in which the eye’s structure is incomplete. A coloboma often causes blindness at birth and can be linked to other serious syndromes. After the diagnosis, Sarah and Tim were surprised to discover that there was little information to be found.

They eventually learned about the work of Brian P. Brooks, MD, PhD, Chief of the Unit of Genetic and Developmental Eye Disease at the National Eye Institute. “We were thrilled to learn that the world’s leading, and pretty much only, coloboma expert was just up the street from us at the NIH,” Sarah says.

At 18 months old, Evan spent two days at the NIH participating in a genetic study. Sarah and Tim were impressed with the care and support they received from Dr. Brooks and his team. They feel fortunate that today Evan’s vision is largely fine and he suffers no related syndrome.

Sarah and Tim realize the critical importance of “A Place Like Home” for families going through difficult times. Although they never stayed at The Inn, Sarah says, “We support The Inn because our hearts break for the families that come [to the NIH] with really sick children seeking both care and answers. We also support The Inn because it’s so important to our family that people from all over the world [can come to the NIH] to participate in Dr. Brooks’ coloboma study, so that Evan’s children might have a higher probability of not being born visually impaired.”