Smiley Tristan

Tristan is a lovely, perfect 16 month old boy.

After 4 days of begging him to come out, Tristan was born 9-17-96 via cesarean. He is our little angel, and I have yet to see him sin. During Tristan's early months of life, everyone noticed his inability to focus on anything.

At 3 months of age, his first Christmas, I was very upset that Tristan would not look at the Christmas tree. I thought he was just difficult to entertain. His eyes were not a big concern at that time. I had a slow eye as a baby and it corrected itself. His father and I thought he may just have weak eye muscles. At 4 months, his pediatrician thought his focusing was improving. She said if it didn't dramatically improve by 6 months, then he should see an opthamologist.

Well, at 5 months his eyes began to twitch so off to the opthamologist we went. The first visit is one we'll never forget. We thought the doctor would say he needed glasses, but instead he said we was blind and probably had retinitis pigmentosa. After an MRI, VER, ERG, EEG, a second opthamological opinion, a pediatric neurologist, and an endocrinologist, back to our original opthamologist we went.

We later learned, with little help from these "experts" that Tristan has ONH. Tristan is currently on synthroid for a hypothyroid and may likely need growth hormones in the future. He shows no vision, and has not yet said his first word. However, he does love to bounce, he loves the jonny jumper, to swing, to dance, and he loves....to stand. He is not yet walking, but he can pull himself up to a sitting and standing position on the floor and in his crib. He plays with the V-teck musical toys, a bongo drum, a mini baby grand piano, and he loves..paper.

Tristan is my first child. He appears to be developing quite normally, although he is behind. He recently had an occupational therapy evaluation and is expected to undergo OT and speech therapy. I couldn't be luckier, than to have had this miracle. You sing to him and he laughs and laughs and laughs. He is a joy to all and I will never consider him in any way handicapped or disabled. Holly Johnson, mother

Happy boy Tristan!!!

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.