Meet Finnegan: How Finding CCVI Was 'Meant To Be'

“You get this diagnosis and you see what you’re up against, all the complications, and you have no idea what path you’re headed down.”

With the help of Children’s Center for the Visually Impaired, Finnegan’s family found a path forward.

Finnegan was born with Norrie disease, a rare genetic condition that causes detached retinas. Due to the diagnosis, Finnegan only has light perception with minimal functional vision. In the span of one week, his parents, Connor and Shelby, received his diagnosis and traveled across the country to see one of the only specialists in the nation for the condition.

“It was overwhelming. All those baby books that our family and friends gave us before he was born,” says Connor. “We realized we can’t use any of them because he can’t see them.”

As Finnegan’s parents waited at a hospital in Detroit for a surgery, their phone rang. On the other end, CCVI’s Director of Vision, Alex Olson, connected the family to the state’s early childhood agency and began organizing in-home care with a physical therapist and a certified teacher of the visually impaired.

“Getting that call,” says Shelby. “It was the most ‘meant to be’ moment.”

When parents of a child with a visual impairment check the CDC’s milestones for development, they often find that their child’s roadmap looks very different. Children’s Center for the Visually Impaired exists to provide families that roadmap.

For one-year-olds with sight, many parents see their child wave ‘bye-bye’ for the first time and play ‘Pat-a-Cake’. For kids like Finnegan, progress and hope are found in simply orienting to his parents’ voices.

“In medical school, the eye and vision was very much this mystical thing that we really didn’t talk about a lot,” says Connor. “So it was even a new world for me.”

For Finn’s family, the pride comes from seeing where he was and where he is now: a smiling, happy child that loves playing games and musical toys. During their sessions with CCVI, Connor and Shelby glow while they show his teachers what new skill he has mastered each week.

As a supporter of CCVI, you have allowed us to go on the road and meet families where they are. You are the link to resources they wouldn’t have received otherwise and the one who sends specialists into the home of a newborn and their family.

“When I pick him up from daycare, he hears the voice of his mom and gets so excited that I’m there; it’s the best feeling.”