Focus Families
About FOCUSONH BookletCharacteristicsCommunicate For Support  Medical Articles and LinksResearch NewsletterBirthdaysGlossary Meet our Children Inspirational PoetryFamily HomepagesHelp I Just found out my child has ONH/SODWe love Email  drop us a note:)
  Toll Free Parent Support 1.866.FOCUS.50 between the hours of 8 am and 5 pm PST
   
   
       
 

           

 

Abbie Fournier

By: Marc Fournier

 

 

  My daughter Abbie is nine years and has septo optic dysplasia (sometimes known as deMorsier's syndrome). She is blind in her right eye (she actually has optic nerve hypoplasia on the right side) and is missing the septum pellucidum (a mid-brain structure).

She has significant learning disabilities, problems with visual/motor (eye hand) coordination, fine motor difficulties (including not knowing where her body is in space), and social skill problems (not responding to social cues). She can't tie her shoes, start zippers, or button buttons. She is blind in her right eye which adds to her motor skill issues.

She has had seizures and is on tegretol (which appears to frequently cause drowsiness and lethargy). The tegretol appears to be successful in controlling her seizures.

Abbie has great difficulty using her creative skills- she doesn't draw pictures to any extent and has difficulty forming her own creative sentences or stories.

However, she is an insatiable reader, reading at or above her grade level (there is some question about her comprehension abilities). The doctor's cannot understand how she can track so well to read. She is also very positive about her disabilities and works hard to accomplish things she can't do.

I feel lucky because she doesn't have any growth hormone issues and can see out of one eye. Do you have any idea if any of the other kids involved in our group can see at all? It would be interesting to find out. I know Abbie's case is rare because SOD is usually bilateral.

 
     
     
   
     
 

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.

© copyright 2000 - 2006