Dear family and friends,
As most of you already know, Tyler has had trouble seeing and his glasses haven't been correcting his vision. In December, an ophthalmologist began a series of tests, exams, ordered a trip to VCU in Richmond for further tests, and eventually referred Tyler to a retina specialist in order to interpret the results of some of those tests, which has now lead us to finally finding out what was going on with Tyler's vision. He has been diagnosed with an eye disease, genetically born with, Rod Cone Dystrophy, in the family of Retinitis Pigmentosa, which will eventually lead to blindness.
We received the news on February 7th and, needless to say, we have been devastated and are still trying to process the information/shock. Many of you know that we left the office with the doctors telling us that Tyler was going to lose his vision and that we needed to prepare him for a world without sight. His vision has already been shutting down on him and will continue until he is without sight. We knew his vision was bad and had prepared ourselves for many different scenarios, but just not this.
On a scale of 1 to 10, 10 being legally blind, he is at a 6. The doctor cannot give us a time line of when he will lose his vision, only that there has been a lot of damage already. It has been recommended that we
do many things to adjust to the changes that are ahead; including that he try to learn Braille, the use of white cane, and the responsibilities of a owning and caring for a dog (later on for a Seeing Eye dog). So, as
you can imagine, we have been overwhelmed. The doctors' have advised us not to tell Tyler everything due to the traumatizing factor for him at this point. However, we do use words and describe Tyler's vision as "LOW VISION". Two different doctors have sat down with Tyler and have shown him the parts of the eye and how they work. They have described the eye disease and how it is affecting his vision now. For Tyler, these bits of information have been good for him to know. He now knows the "why" as to why can't see well, and understands why, when we have gone for an eye exam, his new prescription glasses have not helped. For us, it has explained a lot about Tyler's behavior and choices; for example: his loss of peripheral and decreased central vision explains him not wanting to ride his bike last summer, preferring video games (2 dimension) to outdoor (3 dimension) games, and holding on to our arms in low light situations. As you look back on your interactions with Tyler, We're sure that it is clearer to you as well.
At this point, Tyler has lost some peripheral vision, a greater amount of color vision in the sense that objects with low contrast are not clear, and most noticeably, and to the greatest extent, his night vision. While it takes healthy eyes 30 seconds to a minute to adjust from light to dark and dark to light, it takes about 7 minutes for Tyler's eyes. This is from the damage to the Rods (these help us to see black and white/contrast and make up most of our peripheral vision). We saw a low vision specialist on Friday, who introduced us to tools and tips that will help Tyler so there is less stress on his system. She showed us how to guide Tyler in dim light such as going to the movies, much in the same way as a blind person would be guided. We learned how the type of lighting can be better for him - natural light, no yellow bulbs (standard household light bulbs), and that we should avoid fluorescent lighting; additionally we have learned that consistency with lighting such as not turning lights on > and off is healthier for his eyes and we now try to keep the lights on until he is in bed instead of turning them down or off; this will not heal the damage that is already there but it will increase his comfort. We have already made changes to our home lighting, converting to the blue "daylight" bulbs and adding lighting as well as increasing the wattages. We are having a set of transition lenses glasses made (the ones that > change slowly as lighting conditions change) to ease the strain on the Rod cells within his eyes. This will help Tyler have a clearer picture during the time that his eyes are adjusting instead of being washed out or "night blinded". He will eventually be getting a pair of "binocular" glasses that actually have a small telescope inserted in the center of each lens of his glasses; these will magnify things that are beyond four feet away. These telescopic inserts will help Tyler read things such as an overhead menu at a fast food restaurant which now he is unable to see. These glasses are called BITA vision enhancers and will greatly increase his use of his central vision. We have also been shown many others "low vision" aids that will help Tyler make use of his remaining vision. For now, Tyler is practicing with a monocular (a miniature telescope) that he holds up to his eye. We are finding that his left eye seems to be the stronger as he uses the monocular most often with that eye. Today at church, he was able to more clearly see our pastor and the choir. We believe that as long as Tyler has some vision, there are many ways
through technology that he can make better use of it.
As for now, we are taking it day by day, and will continue learn, accommodate, and adapt for his life with low vision. We continue to pray for Tyler's healing (miracles can and do happen!) and ask you do the same. We know that all things are possible through God. We know he has a plan for all of us and that his plan is good. We know that this is part of his plan and that good will come of it. We also ask that you join us in
praying that God will give us the strength to accept his will for Tyler and all of us -- the Serenity Prayer comes to mind. Lastly, we know that as long as we keep our faith in Him, that he will keep give us the
strength understanding, and courage to help us through this time.
As for the future, we remain hopeful. We have seen much research on retina prosthetics and hope that someday this "bionic eye" will come to be and restore sight to all persons that it can. We have some doctors that are going to be looking into some studies at John Hopkins University in hope that Tyler will be able to take part in studies and research on this family of eye diseases that can benefit others in the future and maybe even him in the present. Please pray that Tyler can be a part of this very important and needed research.
August 2005
As most of you already know, Tyler has had trouble seeing and his glasses haven't been correcting his vision. In December, an ophthalmologist began a series of tests, exams, ordered a trip to VCU in Richmond for further tests, and eventually referred Tyler to a retina specialist in order to interpret the results of some of those tests, which has now lead us to finally finding out what was going on with Tyler's vision. He has been diagnosed with an eye disease, genetically born with, Rod Cone Dystrophy, in the family of Retinitis Pigmentosa, which will eventually lead to blindness.
We received the news on February 7th and, needless to say, we have been devastated and are still trying to process the information/shock. Many of you know that we left the office with the doctors telling us that Tyler was going to lose his vision and that we needed to prepare him for a world without sight. His vision has already been shutting down on him and will continue until he is without sight. We knew his vision was bad and had prepared ourselves for many different scenarios, but just not this.
On a scale of 1 to 10, 10 being legally blind, he is at a 6. The doctor cannot give us a time line of when he will lose his vision, only that there has been a lot of damage already. It has been recommended that we
do many things to adjust to the changes that are ahead; including that he try to learn Braille, the use of white cane, and the responsibilities of a owning and caring for a dog (later on for a Seeing Eye dog). So, as
you can imagine, we have been overwhelmed. The doctors' have advised us not to tell Tyler everything due to the traumatizing factor for him at this point. However, we do use words and describe Tyler's vision as "LOW VISION". Two different doctors have sat down with Tyler and have shown him the parts of the eye and how they work. They have described the eye disease and how it is affecting his vision now. For Tyler, these bits of information have been good for him to know. He now knows the "why" as to why can't see well, and understands why, when we have gone for an eye exam, his new prescription glasses have not helped. For us, it has explained a lot about Tyler's behavior and choices; for example: his loss of peripheral and decreased central vision explains him not wanting to ride his bike last summer, preferring video games (2 dimension) to outdoor (3 dimension) games, and holding on to our arms in low light situations. As you look back on your interactions with Tyler, We're sure that it is clearer to you as well.
At this point, Tyler has lost some peripheral vision, a greater amount of color vision in the sense that objects with low contrast are not clear, and most noticeably, and to the greatest extent, his night vision. While it takes healthy eyes 30 seconds to a minute to adjust from light to dark and dark to light, it takes about 7 minutes for Tyler's eyes. This is from the damage to the Rods (these help us to see black and white/contrast and make up most of our peripheral vision). We saw a low vision specialist on Friday, who introduced us to tools and tips that will help Tyler so there is less stress on his system. She showed us how to guide Tyler in dim light such as going to the movies, much in the same way as a blind person would be guided. We learned how the type of lighting can be better for him - natural light, no yellow bulbs (standard household light bulbs), and that we should avoid fluorescent lighting; additionally we have learned that consistency with lighting such as not turning lights on > and off is healthier for his eyes and we now try to keep the lights on until he is in bed instead of turning them down or off; this will not heal the damage that is already there but it will increase his comfort. We have already made changes to our home lighting, converting to the blue "daylight" bulbs and adding lighting as well as increasing the wattages. We are having a set of transition lenses glasses made (the ones that > change slowly as lighting conditions change) to ease the strain on the Rod cells within his eyes. This will help Tyler have a clearer picture during the time that his eyes are adjusting instead of being washed out or "night blinded". He will eventually be getting a pair of "binocular" glasses that actually have a small telescope inserted in the center of each lens of his glasses; these will magnify things that are beyond four feet away. These telescopic inserts will help Tyler read things such as an overhead menu at a fast food restaurant which now he is unable to see. These glasses are called BITA vision enhancers and will greatly increase his use of his central vision. We have also been shown many others "low vision" aids that will help Tyler make use of his remaining vision. For now, Tyler is practicing with a monocular (a miniature telescope) that he holds up to his eye. We are finding that his left eye seems to be the stronger as he uses the monocular most often with that eye. Today at church, he was able to more clearly see our pastor and the choir. We believe that as long as Tyler has some vision, there are many ways
through technology that he can make better use of it.
As for now, we are taking it day by day, and will continue learn, accommodate, and adapt for his life with low vision. We continue to pray for Tyler's healing (miracles can and do happen!) and ask you do the same. We know that all things are possible through God. We know he has a plan for all of us and that his plan is good. We know that this is part of his plan and that good will come of it. We also ask that you join us in
praying that God will give us the strength to accept his will for Tyler and all of us -- the Serenity Prayer comes to mind. Lastly, we know that as long as we keep our faith in Him, that he will keep give us the
strength understanding, and courage to help us through this time.
As for the future, we remain hopeful. We have seen much research on retina prosthetics and hope that someday this "bionic eye" will come to be and restore sight to all persons that it can. We have some doctors that are going to be looking into some studies at John Hopkins University in hope that Tyler will be able to take part in studies and research on this family of eye diseases that can benefit others in the future and maybe even him in the present. Please pray that Tyler can be a part of this very important and needed research.
August 2005
Recently, Tyler Strong Memorial Hospital New York Tyler
Thank you,
To learn more you can go to www.blindness.org
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