I'm so glad the Dr.s are finally bringing to light children who have SOD/ONH.  I have a 5 yr old grand daughter with this condition. She is completely blind and does take  HGH shots daily and on thyroid meds and just a week ago suffered her first seizure which she was hospitalized for 2 days with.   Katie Price is an inspiration to us all with a child like this.  My grand daughter is the light of my life.  Thank you Dr.s.... Denise