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
   
   
       
 
Stormy Place
 
 
Stormy Place
By: Kuuleialoha Place
 
 
   
  Hi. Stormy Place was born November 19, 1996. She was diagnosed with Septo-Optic Dysplasia when she was 2 months old. We noticed that, in her left eye, the iris was not completely round. So i took her to an eye doctor and he sent me to another, and that one sent me to another. They all thought she had retinal blastoma. It wasn't after an MRI and a CT scan that we finally found out what the problem was. Stormy's retinas are completely detached in both eyes and her optic nervers aren't fully developed. So she is completely blind at this point. She is also missing her corpus collosum and her septum pellicidium is not fully developed. Her pituitary gland was also not fully developed. Her neuro-opthamologist told us we needed to take her to see an endocrinologist and a neurologist.

Stormy has pan-hypopituitarism and takes cotizone for it. She also has hypothyroidism and takes synthnoid for that. She is also growth hormone deficient and takes Nurtopin AQ.

When she saw her neurologist he said she was doing fine. So at the moment we don't know the extent of what will happen with her mentally. Stormy is doing very well with keeping up with her milestones and is growing normally.

She loves to stand up and bounce and roll around. Just recently she has started to crawl. Her vision teacher is very surprised at her. She claims that Stormy doesn't act like a normal blind baby at her age. Stormy is such a happy, affectionate little girl and is loved by everyone that meets her. She has the most contagious smile and loves to laugh. Her and her older brother love to play around on the floor with each other. Stormy is such a wonderful addition to my family and i am looking forward to a challenging future with my family.

 
   
     
 

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