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
Routine
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
Music
Would love a support group in our area
Having HGH injections that work well with your body and don't trigger allergic reactions. (it sucks when that happens)