Meeting others with this condition
Validation and reassurance
I found someone near me that understood
My daughter Emma has ONH/SOD
Being around people she knows
My granddaughter was recently diagnosed
Having a supportive family is key
Having my daughter attend a school for the blind
I found doctors that researched into her condition
She was diagnosed at 2- 2 & 1/2 weeks old
We are clueless and still learning
Having an understanding and experienced healthcare team is key
Having her in therapies
My family attempted to support me
Would love a support group in our area
Having a medication and care schedule that works for you and your needs