When My Mommy took me to the DR's at 2 weeks old I had lost weight instead of gaining it, so My mom had to bring me to the DR's to be weighed every week. I just kept losing weight instead of gaining it. My mom tried supplementing me with formula, and adding extra nursing's in (I was breast fed), but nothing helped. When I had my checkup at 2 months old I was down to 7 lbs 1 oz. So the DR was going to recommend me to a pediatric Dr. He gave me my vaccinations and I went home. Later that night my Mommy heard me scream , and she came to check on me. I was turning blue and limp. After 911 was called, I was put on the Life Flight Helicopter and flown to the Hospital. My Mommy got there before I did, lol. I was put in the PICU for a couple days and then moved to a regular room. They did all kinds of tests on me, EEG, MRI, and lots of blood tests, I didn't like that. I had to see a Pediatric Ophthalmologist , and a Endo , and a Neuro. Finely they told my Mom that I had DeMosiers syndrome or Septo Optic Dysplasia, which she hadn't heard of. So she went down and asked the Hospital Library to send her up info on it, but they didn't find much. So she just knew what the DR's told her. That I would have to see lots of DR's for the rest of my life. They also told her I might be a dwarf, which really scared her. They put me on a higher calorie formula and I started gaining weight. I had nurses that came to my Home once a week to weigh me, and by the time I was a year old, I was caught up.
In August of 1997, my Mom moved onto a street and met a couple that had a daughter that had the same thing I did. That was very helpful for my Mom, because they sometimes brought her info. My Mommy had my little brother Ian in December of 1997. I wasn't happy about it, but I finely got used to his crying. In May of 1999 way after the Man's wife had moved out, My Mom and him started dating, so she was able to get online, and find lots of info about Septo Optic Dysplasia. On July 21st, 2000, My Mommy married that wonderful man, In a very special ceremony. Now I have a sister too, along with my 2 brothers. I also have a great new Daddy. I share my room with my sister Emily, who also has SOD, and we sometimes play Ring Around the Rosy together.

I have ONH in both my eyes, though my Mom thinks I have light perception the DR says I cant see. I am now taking Growth Hormone shots every night. I am on Saizen, and I use the Cool Click delivery method. I also get Cortef when I am sick and stressed, and Solu-cortef shots, if I am vomiting. I have had a test for DI and a cortisol stress test , that was normal. I am a very happy little girl, but can throw fits sometimes. Right now I am on Risperdal, so I don't throw those as much and I don't bite myself. I am also Diagnosed Autistic, and Mentally Retarded. I am developmentally behind at about a 9-24 month level. I am 6 years old right now. I can walk when I want too, and have a few words I can say. My favorite is "Eah-ah" which means Eat. I go to a regular school in a Kindergarten class. I have several friends there, and a great aide named Deb. I am doing really good in school, and all the teachers are amazed.

I see a OT, and a Speech therapist once a week. I like the OT stuff, because I also have Sensory Integration dysfunction. My Mommy thinks I am very pretty and that I have a great smile. I like to be tickled, and I also like to play Patty-Cake, and Row, Row, Row your boat. My Mommy likes to talk to people, so you can always find her through the SOD list or in chat on Saturday nights, and Tuesday afternoons.

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.