Kiony Gabriel Fernandez

 
My son, Kiony, is 20 months old. I had a perfectly healthy and normal pregnancy with Kiony. However, the birth of Kiony was traumatic for me and him. When Kiony was 4 months old, we found out he has a condtion called Optic Nerve Hypoplasia (ONH) which results in very poor vision. Kiony is legally blind. When he turned 6 months old they wanted to do an MRI because of his vision to make sure there are no other problems. When we got the results of the MRI, I believe around 9 months of age, the neurologist explained to us that when his brain was developing the gray matter and the white matter - in the front of his brain that the controls his motor skills -  smushed together. A result of that is that Kiony has cerebral palsy and so Kiony will always have cerebral palsy since there is no cure for this the only thing we can do to help him with his cerebral palsy and his muscle tightness is physical therapy and occupational therapy. Along with  the slow development of his motor skills, Kiony gets speech therapy.

Now let me explain about his vision, Kiony can not have glasses because there's nothing to correct his vision. ONH is when the nerves that connect from the eyeball to the brain don't fully develop when the baby is in the womb. This is a rare and unexplainable situation; the doctors only know that it's more common for young first-time mothers. Kiony receives vision therapy for his eyes. His vision will never get better, but through vision therapy Kiony has learned to use what vision he has and he is doing amazing with his therapy.