Kaylee was born on May 12,1999. It was an easy pregnancy and an easy labor with no complications. She weighed 6 lbs 6 oz, and she was 19 inches long. During most of my pregnancy and during my labor my husband Jon was underway because he's in the Navy. So Jon got to finally meet Kaylee in person when she was a little over 2 months old. At this point we still had no idea there was any thing wrong with her eye sight. Kaylee continued to develop at a normal rate, actually hitting her milestones early. She sat on her own at about five and a half months, she crawled about 7 or eight months old, and she walked at a year old, and had already begun talking.

When Kaylee was eight months old we took her for a routine checkup. I had noticed that her left eye sometimes drifts outward, especially when she's tired. The doctor assured me this was probably normal, and nothing more was done about it. Since my mother in-law works for an ophthalmologist, we decided to have him look at her eyes, so we could get a second opinion. The doctor dilated her eyes, took one look at them and sent us to Boston to see a pediatric specialist. We were then told that Kaylee had ONH. Her left eye is less than ten percent the size of a normal optic nerve. She is legally blind in her left eye. We had no idea she couldn't see out of it because she's never had trouble seeing. Her right seems to have completely normal vision, even though her right optic nerve is slightly smaller than normal. At this point we were told that everything else was probably normal since she is so healthy, but we should probably get a MRI done just to be on the safe side. He said he wanted to make sure her pituitary gland was normal. So we go the MRI done, and we were told she is missing her septum pellucidum. So now her diagnoses was up graded to Septo Optic Dysplasia.

If I hadn't gotten her vision checked because of her lazy eye, we would have never known any of this. Kaylee has shown no outward signs of being SOD so far. Her height and weight have been normal and steadily climbing in an upward direction on the growth chart. All of her blood work has come back normal(so far)and we pray it will continue to do so. We haven't experienced any difficulties with her eating habits, social skills, or development so far. People who meet her have no idea she's any different than other children, except the fact that she brightens up the room with her beautiful smile and charming personality. Anyone who meets her can tell she is truly a beautiful person, inside and out. She is the most loving child I have ever met, and extremely smart. I have been blessed by God to have such a special child in my life, and I thank him everyday for the gift she has bestowed on my family and me.

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.