Vision for Jack and Colleen
Donation protected
Have you ever enjoyed a sporting event, a car ride along a scenic road, sat down to read a good book or better yet enjoyed all that Disney World has to offer? Those are the things that are impossible for Jack and Colleen, let alone day to day doings like school, without the help of visual aids, which we need now. Unfortunately Insurance will NOT cover what we found! eSight Eyewear
Looking at Colleen and Jack, you see nothing but two outgoing normal kids, 7 and 5 years old respectively, that love to run around, play with their friends and they wear glasses. But as you get to know them you come to realize a lot of who they are, and how they do the things they do, is because they have NEVER known what 20/20 vision is and learned from birth on to adapt. Not to say they don’t have mishaps because of their loss of vision, because trust me they do, but they have definitely made use of their other senses. Colleen and Jack were both born legally blind. Unfortunately, we as their parents were not made aware of the of their visual situation until recently. Colleen was about 15 months old when we really started to notice how close she would get to things, like her food while eating, our phones or TV’s if we were watching anything. So, we decided to take her to a Pediatric Ophthalmologist who confirmed she needed glasses. As time went on we notice she still, even with her glasses, was looking at things closely or would look over the top of the glasses, telling us it was easier when up close to look without her glasses, which made no sense to us at the time. Jack was tested when he was 6 mo. old and it turned out he needed glasses as well. Still not being told the gravity of their situation by their Pediatric Ophthalmologist, time went on and it just seemed that even though glasses helped with some things, they still couldn’t see anything that was more then 5’ in front of them. Recently, with the phenomenal teachers at North Boone Schools, it was brought to our attention that they both were having even more issues in the classroom. Not being able to see the White Board, in P.E. Class and especially while reading their lessons. With the schools help and the resources we were put in touch with, thanks to the NB staff, we were able to get to the bottom of the problem for both kids and now with Colleen in 2nd Grade and Jack in Kindergarten, we were now learning about their condition and finding out that they are both Legally Blind. That is a tough phrase to hear and embrace as a parent.
Now knowing what we know, things are starting to make a LOT more sense. Why neither child could see their older siblings, who would be playing ball on a basketball court 20’ or less away from them, all while they would be on the first bench at the school gymnasium. Or when Colleen begged to go to a Cubs/White Sox Game so John took her and her older brother, then to hear her say she couldn’t see anything at all and was only able to hear the game, was a heartbreaking moment. But she made the best of it and smiled all while listening and having her dad give her play by play of the game. Worse was to think we took the kids 2 years ago to Disney World and come to find out they couldn’t enjoy any of the Parade, the Fireworks and other sites of Disney like the rest of the family.
Both kids have a passion for Basketball and baseball/softball, yet these are two VERY difficult sports for children who are legally blind. They truly are an inspiration on how they have adapted. Colleen is a phenomenal basketball shooter on the court, as she has learned to “shoot at the middle of the square white thing”. She looks for the color difference between the backboard and the surroundings but cannot run back and forth on a court to actually play ball.
With the help of E-Sight theses dreams can become a reality! When we took Colleen and Jack in for their demo they started out reading numbers at a distance (which you can see in the attached video). First with just their glasses and got to about a 20/80 distance. Beyond that it was too difficult for them to see. Once they put on the E-Sight Visual Aid, WITH OUT their glasses, they started reading the numbers and Colleen got her sight down to a 20/25 and Jack got to a 20/15. We were AMAZED!! They were actually seeing us for the first time as well. To hear my daughter say she could see my eyes were brown made me cry. To look out of a 20-story building and have them actually see cars and people down below on the streets and sidewalks was a first as well. This tells us with the aid of E-Sight, they not only can read things, but they too can see things at a distance that would have never been possible, like watching a #ChicagoCubs and #WhiteSox game! With E-Sight our children and others can have many “firsts” and do many “Day to Day” things that the rest of us with good vision take for granted. The cost of E-Sight Visual Aid is $10,000 for each person. Many of us take our eyesight for granted. As a parent, we want to do whatever it takes to make our children's life better, knowing that they will never experience all that life offers due to this disability. In light of this, if you could please open your hearts and make a donation to help bring the miracle of sight, not only to Jack and Colleen, but to help other children and adults with this condition too. You would be helping make a BIG DIFFERENCE in their quality of life as well. Thank you all so much in advance for your generosity. (Any money raised above and beyond the $20,000 needed for Jack and Colleen is being paid forward to help others.)
Jack and Colleen Thank YOU from the bottom of their hearts as do John and I. Sincerely
The Long Family
Colleen's was diagnosis as: High Myopia Progressive Degenerative, Bilateral
Colleen is -13.00 in her right eye and -12.75 in her left eye Dist cc: 20/200+1 in each eye.
Jack was diagnosed as: Posterior Staphyloma, Bilateral High Myopia Degenerative
Jack is -17.25 in Right eye and -16.50 in Left eye Dist cc: 20/200 in both eyes
Which means:
Degenerative myopia is more severe than other forms of myopia and is associated with retina changes, potentially causing severe vision loss. ... Pathologic myopes, particularly those with higher refractive errors, are at risk for retinal detachment and macular changes. It progresses rapidly, and visual outcome depends largely on the extent of fundus and lenticular changes. Patients with degenerative myopia typically complain of decreased vision, headaches, and sensitivity to light (all of which both kids have frequently). If retinal degeneration or detachment is present, patients may also report light flashes and floaters, which are associated with retina changes. Those with degenerative myopia have an increased incidence of cataract formation (nuclear cataracts are most typical).
Myopia is a condition whereby images come into focus in front of the eye, resulting in a blurred image on the retina. The more severe the nearsightedness, the farther the image is from the retina, which results in more blurry vision in the distance. Myopia causes light rays to focus on the front of the retina. As a result, close objects are seen clearly, while distant objects appear blurred. Near vision, however, can deteriorate to a level where reading even close to the face can become difficult.
Posterior staphylomas are more commonly congenital (at birth) or as a manifestation of more extreme myopia (nearsightedness). The congenital staphylomas occur near the optic disc which is commonly of normal size, but frequently the vision is substantially lowered in these cases.
When related to myopia, the vision correction or disturbance is usually from the myopia alone although the staphylomatous protrusion in the back of the eye can contribute to visual distortion. Peripapillary staphyloma is a rare non‐hereditary congenital anomaly characterized by a relatively normal appearing optic nerve head located at the base of a staphylomatous excavation. It is generally, not associated with other congenital defects or systemic diseases. Peripapillary staphyloma is generally unilateral with bilateral cases being extremely rare.
Looking at Colleen and Jack, you see nothing but two outgoing normal kids, 7 and 5 years old respectively, that love to run around, play with their friends and they wear glasses. But as you get to know them you come to realize a lot of who they are, and how they do the things they do, is because they have NEVER known what 20/20 vision is and learned from birth on to adapt. Not to say they don’t have mishaps because of their loss of vision, because trust me they do, but they have definitely made use of their other senses. Colleen and Jack were both born legally blind. Unfortunately, we as their parents were not made aware of the of their visual situation until recently. Colleen was about 15 months old when we really started to notice how close she would get to things, like her food while eating, our phones or TV’s if we were watching anything. So, we decided to take her to a Pediatric Ophthalmologist who confirmed she needed glasses. As time went on we notice she still, even with her glasses, was looking at things closely or would look over the top of the glasses, telling us it was easier when up close to look without her glasses, which made no sense to us at the time. Jack was tested when he was 6 mo. old and it turned out he needed glasses as well. Still not being told the gravity of their situation by their Pediatric Ophthalmologist, time went on and it just seemed that even though glasses helped with some things, they still couldn’t see anything that was more then 5’ in front of them. Recently, with the phenomenal teachers at North Boone Schools, it was brought to our attention that they both were having even more issues in the classroom. Not being able to see the White Board, in P.E. Class and especially while reading their lessons. With the schools help and the resources we were put in touch with, thanks to the NB staff, we were able to get to the bottom of the problem for both kids and now with Colleen in 2nd Grade and Jack in Kindergarten, we were now learning about their condition and finding out that they are both Legally Blind. That is a tough phrase to hear and embrace as a parent.
Now knowing what we know, things are starting to make a LOT more sense. Why neither child could see their older siblings, who would be playing ball on a basketball court 20’ or less away from them, all while they would be on the first bench at the school gymnasium. Or when Colleen begged to go to a Cubs/White Sox Game so John took her and her older brother, then to hear her say she couldn’t see anything at all and was only able to hear the game, was a heartbreaking moment. But she made the best of it and smiled all while listening and having her dad give her play by play of the game. Worse was to think we took the kids 2 years ago to Disney World and come to find out they couldn’t enjoy any of the Parade, the Fireworks and other sites of Disney like the rest of the family.
Both kids have a passion for Basketball and baseball/softball, yet these are two VERY difficult sports for children who are legally blind. They truly are an inspiration on how they have adapted. Colleen is a phenomenal basketball shooter on the court, as she has learned to “shoot at the middle of the square white thing”. She looks for the color difference between the backboard and the surroundings but cannot run back and forth on a court to actually play ball.
With the help of E-Sight theses dreams can become a reality! When we took Colleen and Jack in for their demo they started out reading numbers at a distance (which you can see in the attached video). First with just their glasses and got to about a 20/80 distance. Beyond that it was too difficult for them to see. Once they put on the E-Sight Visual Aid, WITH OUT their glasses, they started reading the numbers and Colleen got her sight down to a 20/25 and Jack got to a 20/15. We were AMAZED!! They were actually seeing us for the first time as well. To hear my daughter say she could see my eyes were brown made me cry. To look out of a 20-story building and have them actually see cars and people down below on the streets and sidewalks was a first as well. This tells us with the aid of E-Sight, they not only can read things, but they too can see things at a distance that would have never been possible, like watching a #ChicagoCubs and #WhiteSox game! With E-Sight our children and others can have many “firsts” and do many “Day to Day” things that the rest of us with good vision take for granted. The cost of E-Sight Visual Aid is $10,000 for each person. Many of us take our eyesight for granted. As a parent, we want to do whatever it takes to make our children's life better, knowing that they will never experience all that life offers due to this disability. In light of this, if you could please open your hearts and make a donation to help bring the miracle of sight, not only to Jack and Colleen, but to help other children and adults with this condition too. You would be helping make a BIG DIFFERENCE in their quality of life as well. Thank you all so much in advance for your generosity. (Any money raised above and beyond the $20,000 needed for Jack and Colleen is being paid forward to help others.)
Jack and Colleen Thank YOU from the bottom of their hearts as do John and I. Sincerely
The Long Family
Colleen's was diagnosis as: High Myopia Progressive Degenerative, Bilateral
Colleen is -13.00 in her right eye and -12.75 in her left eye Dist cc: 20/200+1 in each eye.
Jack was diagnosed as: Posterior Staphyloma, Bilateral High Myopia Degenerative
Jack is -17.25 in Right eye and -16.50 in Left eye Dist cc: 20/200 in both eyes
Which means:
Degenerative myopia is more severe than other forms of myopia and is associated with retina changes, potentially causing severe vision loss. ... Pathologic myopes, particularly those with higher refractive errors, are at risk for retinal detachment and macular changes. It progresses rapidly, and visual outcome depends largely on the extent of fundus and lenticular changes. Patients with degenerative myopia typically complain of decreased vision, headaches, and sensitivity to light (all of which both kids have frequently). If retinal degeneration or detachment is present, patients may also report light flashes and floaters, which are associated with retina changes. Those with degenerative myopia have an increased incidence of cataract formation (nuclear cataracts are most typical).
Myopia is a condition whereby images come into focus in front of the eye, resulting in a blurred image on the retina. The more severe the nearsightedness, the farther the image is from the retina, which results in more blurry vision in the distance. Myopia causes light rays to focus on the front of the retina. As a result, close objects are seen clearly, while distant objects appear blurred. Near vision, however, can deteriorate to a level where reading even close to the face can become difficult.
Posterior staphylomas are more commonly congenital (at birth) or as a manifestation of more extreme myopia (nearsightedness). The congenital staphylomas occur near the optic disc which is commonly of normal size, but frequently the vision is substantially lowered in these cases.
When related to myopia, the vision correction or disturbance is usually from the myopia alone although the staphylomatous protrusion in the back of the eye can contribute to visual distortion. Peripapillary staphyloma is a rare non‐hereditary congenital anomaly characterized by a relatively normal appearing optic nerve head located at the base of a staphylomatous excavation. It is generally, not associated with other congenital defects or systemic diseases. Peripapillary staphyloma is generally unilateral with bilateral cases being extremely rare.
Organizer
Shannon Ruble
Organizer
Poplar Grove, IL
