Skip to content

Blind Since Birth: my Life with ONH

Disability advocate, small business owner and dog mom Lacie LaJoie has lived with blindness since birth. Here, she talks about balancing day-to-day life with optic nerve hypoplasia.

Lacie, a white woman with long, light brown hair, stands against a tan background, smiling with her eyes closed.

I am Lacie, and I have been blind since birth.

I was born with a rare congenital disorder, bilateral optic nerve hypoplasia (ONH), meaning I am blind in both eyes. This correlates to an underdevelopment that happens within the womb. My eye sight consists of low light perception in my right eye, no sight in my left eye, and zero peripheral vision in either.

At the age of 9, I was adopted into a loving home.

Growing up blind meant making adjustments for my day-to-day life. In order to help reduce strain, I was to wear an eye patch. I was not able to play sports, in hopes of protecting my eyes. I was always embarrassed to do the school vision exams because of bullying. It was difficult to be seated alphabetically in class, due to nearly always being placed in the back of the classroom.

It wasn’t until I was a teen that I realized how much my vision impacted my life in a magnitude of ways.

The realities of ONH

Being born with ONH goes beyond visual impairment – it can also stem into autism/neurodiversity, endocrine dysfunctions, nervous system abnormalities, gastrointestinal distress, sleep dysfunctions, difficulties with temperature regulation, mental health struggles and more.

The cause of ONH is not yet understood, as it is a sporadic disorder. There are no effective treatments to regenerate nerve cells or to restore connections between the eye and brain once the optic nerve is lost, meaning there is no medical treatments or surgical treatments to help improve the diagnosis of ONH.

Advocating, baking and being a dog mom: living with ONH

Living with ONH isn’t easy, but I graduated college with a degree in education and am now a childhood educator. I also own a small business, a bakery called Lacie’s Loft. And most importantly, I am a dog mom to my girl Ella.

With very little research surrounding ONH, the importance of advocacy is even more crucial.

I advocate to bring awareness to one’s reality, to educate, to provide inclusion, and to show support to myself and others in the community.

About the author

Lacie LaJoie is a childhood educator, disability advocate, dog mom and bakery owner from a small town in the southern United States. You can follow her on Instagram and check out her bakery, Lacie’s Loft, on Facebook.

Owner of Dotty About Braille Hayley Kellard, a white woman with long, blonde hair wearing glasses, sits at a red Perkins Brailler working on a card

Becoming Dotty About Braille

Aaron, a young white man with a mustache and black-rimmed glasses, smiles for the camera

Through the LENS of Experience: Cultivating a New Generation of Blind Leaders

Tom, a young white man with short, dark brown hair and balck-rimmed glasses, smiling

From High School to College: New Surroundings, New People (Same Old Vision)