Two and a half weeks after my due date, on September 18, 1993, Connor Michael Gullett was born. He was our second son, weighing 8 lbs. 5 oz. connor was born with a full head of dark hair, and with his beautiful blue eyes wide open. We thought it was odd that he didn't cry, but after apgar scores of 8 and 9 respectively, the doctors told us not to worry. The pediatrician then followed saying Connor did not have his sucking reflex. Again we were told not to worry, this happens quite often. Sure enough 12 hours later Connor was drinking a bottle like that of a newborn. Two days later we went home.

Almost 4 weeks went by and everything seemed normal. He rolled over at 21/2 months, and was already eating cereal. My mom and I were shopping with Connor one day, and we noticed that the sunlight was directly in his eyes. Connor just stared straight ahead, never even blinking. We thought it was strange, but tried to dismiss it. We mentioned it to his pediatrician. He again told me not to worry, Connor had just not learned how to focus. At the second month check up we again brought up our worries. We again were told to dismiss it. By the third checkup we insisted that he see a pediatric ophthamologist.

Three days later our fears came true. Connor was diagnosed with Optic Nerve Hypoplasia. The opthamologist felt there was little if any vision.The usual tests were ordered. The CT scan revealed no septum pellucidum,hence our introduction into the world of Septo-optic Dysplasia. Connor then went through a series of hormone testing at about three and a half months of age. At that point all hormone levels were normal. Problems were anticipated though. The CT scan could not detect any pituitary gland. It was there, but doctors felt it must be malformed.

A year passed. Connor was seeing a visual therapist. She did not think Connor was developing as fast as he should be, even for a totally blindchild. Connor was also beginning to show signs that his endocrine system was not functioning properly.

An MRI was ordered first. It revelaed Connor was severely mentally challenged. He has schizencephaly,polymicrogyrie, and polymacrogyrie. The neurologist said he would never walk, talk, crawl, etc. Boy, has Connor proven him wrong. Next came more hormone testing. The worst of these being the test for diabetes insipidus. The poor child used to be able to drink a river, and for 24 hours he could have nothing. After numerous hospital stays, Connor was found to have panhypopituitarism. He is on Synthroid for low thyroid,Humatrope for low growth hormone, and DDAVP for diabetes insipidus. He also takes Atarax to help him (and us) sleep, Propulsid for digestion problems, Zantac for heartburn and reflux, and Periactin to help increase his Appetite.

As you can tell from the list of medications, Connor has had eating problems. Our last series of tests included a nuclear medicine test to look for digestion problems and a scope. Connor has nothing physically wrong. A second MRI shows what appears to be cerebral atrophy. Doctors feel this has something to do with his refusal to eat. Connor is very thin. We have been able to maintain his weight by having him drink pediasure, but the doctors are still throwing around the word G-tube. Hopefully, we can keep him growing right.

Connor is now four years old. He attends an integrated preschool four days a week, and a visually impaired preschool one day a week. He loves it, and so do we. It's great for him to be around other children his age,and for them to be around him. I think it helps everyone involved to grow and learn. In addition to therapies at school, Connor gets private pt, OT,and speech therapies at home Connor uses a wheelchair for the moment, but we are hoping to get him out of it someday. He loves to roll all over the floor, and is even attempting to crawl. Connor does do some weight bearing on his legs, and with persistence we know someday he will walk.

Connor does say a few words: mama, dada, EJ (his older brother), and Ace (the dog),but he does not speak to communicate. We just have figured out what he wants.We added an addition to our family recently. Connor's little sister,Darbi, was born in March of '97. She loves to bug her older brothers. She climbs on Connor and steals his toys. He yells and takes them right back. Sibling rivalry. We love it. Our oldest son, EJ, is 8. He asks a lot of questions about Connor, but seems to take everything in stride.My husband, Scott, and I feel nothing but love and pride towards Connor.

He has changed our lives, for the better. Some people who find out about Connor's disabilities say to us, " we are so sorry." We always say, "we're not." Connor is the light of our lives. Every new day brings new challenges and new accomplishments. With Connor, everyday brings us something to smile and laugh about.

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.