Living with Bi-lateral Coloboma

Hi Everyone,

I'm Ellen's oldest (maybe not chronologically) and dearest (i hope) friend, Steven. My daughter was born with a rare condition called Bi-lateral Coloboma. It is a retinal anomaly in which her retinas were not fully formed before birth. She therefore has these tiny key-hole size apertures in the backs of both eyes. She is legally blind with 20/200 vision in one eye and 20/300 vision in the other. When originally diagnosed, i was very frightened (as most parents would be) but i took the bull by the horns and researched this problem. I put her in a school which has a program for children with poor visual acuity (many of whom are fully blind) and low vision. She is thriving in the program. A long with occupational therapy and the on-going daily vision therapy she's made huge strides. Having a child with a disability is difficult to a degree yet rewarding when you see their accomplishments. She reads beautifully, does very well socially and emotionally and continues to progress at her own pace. She is beautiful inside and out and i love to watch her grow on a daily basis. Having a special needs child enlightens me on a daily basis because it makes her accomplishments that more special.

Steven G.