My first years of life were full of hospitals and tests. When I was about four weeks old I took a terrible cold and during this ordeal the doctor detected my visual impairment and sent me to an opthomologist. Next I was put into the hospital and put to sleep to run tests on my eyes. It was then that they found that my optic nerve was not fully developed. They did not find any other abnormalities right then and I was not refered to an endocrinologist or neurologist although I made freequent visits to my opthomologist and was wearing glasses by my first birthday.

I was also plagued with kidney and ear infections and was hospitalized yet again to find out what was causing this. I was given medication that cleared that up. I was also slow in learning to walk although everything else (i.e. sitting up, talking, etc.) progressed as normal.

I entered preschool at age three at the local vocational center to get help form the school district for my visual impairment. Before I entered first grade it was determined exactly how much sight I actually had and that I was legally blind. My parents were then given the choice of sending me to the school for the blind that was twenty miles away from my home or to mainstream me into public schools. They choose the latter because of the distance between my home and the specialized school and because of the push toward mainstreaming. Upon entering school I was provided with an itenerant teacher who worked on a one-on-one basis with me every day until I entered junior high. I was also supplied with monnoculars, magnifiers and was allowed to write with a pen. Everything went normal through my elementary years exept for being constantly made fun of because of my thick glasses, visual imapirment and weight problem which made it harder to do things that other children could do so easily.My grades were passing, but not great. I hated P.E. the most because there were few activities I did well and because of being teased when I could not participate.

However there was a bright spot. When I was in the third grade my parents began to notice my drawings which I did all the time and enrolled me in private art classes. I enjoyed my art imensely especially since there were few other activities I excelled at or could even try for that matter.

When I entered junoior high things changed drasticly..for the better. Not tied down every day with the same group of kids that constantly made fun of me, I began to enjoy school for the first time. My grades improved and I was on the honor roll for the first time. My parents thought I would not like junior high and were unsure I would be able to handle it altogether but my determination to show I could do normal things soon had those thoughts put to rest.

High school soon followed and the change was no big deal after adapting to the responsibilities that junior high presented. When I was about to turn sixteen I went to my family doctor for a routine physical exam. I had no noticable breast development or a menstrual cycle and despite being at normal levels educationally I was very much behind my peers socially. I was sent for an ultrasound and it revealed no female organs. I was then referred to an endocrinologist.

Extensive blood tests were administered to determine my endocrine function levels. Then he prescribed megadoses of premarin and later provera. A few months later I started to develop breasts and started to have a cycle. I continued to make freequent visits to the endocrinologist for exams and bloodwork to closely monitor my endocrine functions. Later I was started on birth control pills to take the place of the hormone pills. This was easier to take correctly and made my cycle come at regular, predictable intervals. After a routine blood test an MRI of my head was ordered. The doctors were looking for a brain tumor but that was not what they found. It was then that my small, underdeveloped pituitary gland was discovered. This helped to explain my lack of development and my unusually childish behavior.

By then I was out of high school and was more than a year into college persueing my life-long goal of teaching art. College presented me with many challenges especialy the attitude of my art professor and advisor. Becuase of my low vision she was unsure I could handle the responsibilities of teaching or of even attaining the degree. Her skepticism only made me work harder to show I could handle those responsibilities. After spending many frustrating hours with her she finally saw that iI was capable of achieving my goal. After this barrier was broken we found out we were a lot alike and I now think of her as a confidant as well as one of my favorite professors.

In May of this year I graduated form college with a degree in art aducation and I am now certified to teach art in my home state. I am now persuing a job at the school for the blind that I did not attend. I pray that I can show those children through my own expierience that they can be successful in life. My ultimate goal is to asume an art teaching position and I hope soon I can achieve that goal.

When people look at me they can not believe that I am twenty-three years old and I have a college degree. (Due to the hypopituitaryism I look very young.) I also still possess en endless child-like spirit my dad still calls me his "baby girl" ) although I have learned to act like an adult when I have to. My interests also mirror my unique personality. I do not go to parties or social events like others my age but relish spending time with my wonderful family who know and understand me well. I also enjoy collecting things like Disney stuff (Pooh and Tigger are my favorite) and Beanie Babies. I play sports now.. something I wasn't allowed to do in my childhood. I play backyard baskerball and soccer. I enjoy playing immensely although I can not play on teams. I love spending time with children and keep nursery and teach sunday school at church. I also enjoy conversations with those older than I am. I have many other interests and have recently started my own website with plans in the works for more including one to promote SOD awareness. I lead a fairly normal life now and can do most things exept drive. (unless you count a lawn tractor :-) ) I hope my story has helped to give SOD parents hope for their own children. I am willing and ready to answer any questions you may have about my story . It is a great honor for me to be able to help others who deal with the same expierience.

I would like to give public recognition and thanks to my wondreful parents for all they've done. Without them I could not have achieved and succeeded in my goals. I also want to especially thank my mom for her help in composing my story.

One final word...the first thing an SOD child needs to succeed is loving, careing, understanding and supportive parents. By creating and/or participating in this group you reaffirm your commitment to your wonderful children. The battles ahead may be hard but through your support and love your children CAN achieve success. NEVER give up on your childrens' abilities. They may not be able to do everything as "normal' children do but with your unbounded love and support they WILL succeed in their own special ways. Thank you and God Bless you all.

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.