Tristan was born at 2:50 pm December 31, 1996, after only three pushes. My pregnancy had been rather hard and I was relived to have a such a quick and easy labor. I remember counting his fingers and toes over and over because my dad had always said "they are healthy as long as they have ten fingers and toes." I had worried a lot when I was pregnant and had horrible dreams about my unborn child being born with something horrible.

I know now it is not horrible, but it is SOD. Tristan is now 4 and is truly a joy to be around. He absolutely enjoys life to the fullest. I just could not ask for a happier child. Tristan is considered to have a form of SOD. He has very small optic nerves, vision about 20/800 and a dwarfed pituitary gland. The septum is present but his brain is considered smaller than average. Along with this Tristan has hemi-paresis of the right side, dysotonic muscle tone, low upper body tone, and is orally and tactilely defensive, we are still eating baby food. YUCK!

Tristan sat up alone at 18 months and crawled at 25 months. We are still waiting on the walking. This is Tristan's second year of preschool and he loves it. We recently moved to North Carolina and Tristan goes to The Governor Morehead School for the Blind where he is excelling.He is already meeting some of his 6 month IEP goals after only 3 months!

We dressed Tristan up as a pumpkin for Halloween this year, (his first costume) and he kept looking at himself in the mirror and laughing. It was so cute. And Tristan has to get really close to the mirror to see and the n he does the cutest little thing with his eyes, his best vision is in the bottom quadrant.

Tristan sang carols this year at Christmas and when we got to Gran's house he said "Did Santa come here too?" It may take Tristan a little more time to reach those milestones but I think it makes us appreciate them all the more. We have had many bumps and winds in the road, but I can see the light! Oh, he is the love of my life. Tristan has been a welcome addition to our family and for the first time in 4 years I am ready for Pack baby # 2. I will keep you all posted!

~Rachel Pack

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
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