Elysia was born on April 30, 1990. ( on her aunt jenny's 10th birthday!) She was born 1 month premature. They rushed her to the neonatel icu due to breathing diffuculty. That afternoon the doctor called me and told me that they were running tests for infection. Two days later they said all of the tests were fine but by then she was jaundice, and had to be under the bili lights. We were both in the hospital for 7 days total. ( I was very sick too) Finally I got to bring her home. I was only 17 and had no idea what was in store. I thought that she was fine. She had some trouble sucking but we thought that was from being premature.

         At 1 1/2 months she developed an ear infection and kept a fever even on antibiotic. The family physician wanted to run blood tests. They revealed that she had hemolytic anemia. The next day we were sent to Riley hospital for children. The hemotologist ran more blood work and one of the tests was a chem 7. They found that her sodium was extremely high. So they admitted her. The next step was seeing the opthomologist and we found out she had optic nerve hypoplasia. Then came the CAT scan, which revealed that she has her septum pellucidum. Later that week she was diagnosed with septo-optic dysplalsia.

         Elysia takes DDAVP, synthroid, and cortef. She had seizures in the beginning, but has been seizure free for 4 yrs now. She has no need for growth hormone as she is 5ft tall at 8yrs old! We are still trying to figure that one out. She is also in the beginning stages of puberty.(there is a family history of early puberty)

         Elysia is making great improvements in speech. She is severly delayed in gross motor skills due to her weight. She is in a wheelchair, and wears leg braces. Her vision is very good with her glasses.

         Our entire family has come a long way since her diagnosis. When Elysia was 15 months old her dad and I got married. Then along came Alexis in 1993, and Jacob in 1996.

         Last but not least......Elysia has the most beautiful smile and a very contagious laugh. We all love her for being her.

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.