Hi,my name is Noah ( Geguzis ) Fontaine. I was born in Port Saint Lucie Fl. On July 2, 1998. My mom's name is Christine-marie Geguzis we moved from Fl. To live with my Grammy and Pops in the middle of august I was 6 weeks old. In October my mom died in a car accident about a mile from Grammy and Pops house.

Me and my mom

Before my mom died she and Miss Betty from day care noticed something was wrong with my eyes. Mom made an appointment with an eye doctor in town but he couldn't see me till December. Grammy and Pops took me to the doc's. He told my Grammy that he thought I had Optic Nerve Hypoplasia but he wanted to send me to Augusta to the Medical College of Ga. So off we went. I met my buddy Dr. Brooks there he confirmed the ONH. He also explained to Grammy and Pops what that was. It was awful quite on the ride back home. A little while later Pops got a letter from Dr. Brooks it had phone numbers to different orig. We got involved with "Babies Can't Wait" and "The Ga. Pines" we also got a computer and found this wonderful group on the internet.

Cindy gave us a lot of information one was about seeing an Endo types doc., so off again we went this time to Atlanta Emery University Hospital and I met another new buddy Dr. Parks. He did some tests and told Grammy and Pops that everything looked good but that I would have to come back for yearly check-ups. Dr. Brooks thinks I might have light perception only, time will tell. I don't sleep a lot which I think gets Grammy and Pops sometimes.

Things that I have learned to do. I can crawl and I am now walking behind a V-Tech walker I can drink out of a sippy cup we are working on using a spoon to feed myself, boy can I make a mess.

Grammy and Pops are trying to get permanent custody of me. They say that I'm one of the happiest babies they have ever known. My wish is for everyone to treat me equal and not to prejudge me because of my disability. I am just the same as you except I can't see. I don't want you to feel sorry for me. I want you to love me for me not my disability. I can do a lot of the same things in life that you do, except I learn them in a different way.

I am now going to Atlanta one day a week. Either Grammy or Pops drive there. I go to The Center for the Visually Impaired. They are teaching me different things that I am going to need to know. I am learning how to use a computer with a touch sceen and will be starting pre-cane shortly. There are four other 2 year olds in my class so we also play games.

My very own hiding place:)

I am still a very picky eater it drives Grammy and Pops up the wall that I only eat a few different things no matter how much they try to get me to eat other things. Sleep is still a thing that I don't do much of Pops said if his hair wasn't gray aready that I would have done that I think he's now worried about it falling out.

This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.