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A note from Cody Johnson’s Family:
Cody was born profoundly deaf, and finally at 1 1/2 years old, he was diagnosed as such. After coming to grips with his deafness, we started to look at his options, and tried to figure out what to do. After hours of searching on the web, and researching what was out there, we decided to go with a cochlear implant. The implant has been nothing short of a miracle of technology. Cody went to a school for the deaf and hard of hearing from age 2 to 6, and then had progressed far enough in his hearing abilities to be mainstreamed into public school at age 6, and go to kindergarten with all his neighborhood friends - a pretty amazing thing for a kid who didn't hear until he was 2!
At age 9, after having a routine eye exam, he was referred to a specialist to look at something that was going on in his eyes. Having already dealt with his deafness, and all the emotions, denial, etc. which came with that, he was seemingly dealt another blow - he was diagnosed with Retinitis Pigmentosa. The easiest way to describe this disease is that he first loses his night vision, then he will slowly lose his peripheral vision, until he is basically seeing tunnel vision through a straw. To say the least this is a scary thing for him and me. As of right now, Cody has lost the majority of his night vision. His peripheral is still OK, but over the past two years, I have noticed that he is not seeing things on the ground, and tripping over simple things that we as normal seeing individuals take for granted.
The Foundation Fighting Blindness, has been the site that I go to keep up on the latest clinical trials and what the future holds for Cody with regards to his site. As with Cody's cochlear implant, there are things in progress for the cure of blindness, and even the restoration of lost sight which are truly a miracle for many families like us. It is hard to believe, but something as serious as blindness often takes a back seat to many other conditions, as many people know so very little about it.
The Foundation, has funded some pretty amazing things already. Just over a year ago, a gene therapy was shown which was able to take two individuals with LCA (a related disease), and give them sight. With your support, a cure is in sight for Cody too!
Tour for a Cure Contact:
Frank J. Keane
(505) 265-2222 Phone
Foundation Fighting Blindness & Website Contact:
Stacy M. Fass
Foundation Fighting Blindness
1580 S. Milwaukee Avenue, Suite 606
Libertyville, IL 60048
(847) 680-0100 Phone
Tour for a Cure
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