Chapter 1: Diagnosis
The eye doctor wasnt very nice. After the examination, he told Mom I was playing games. He said I was just being lazy, and that there was nothing wrong with me a good psychiatrist couldnt fix. I was devastated. I was even more devastated when it became apparent that Mom believed him over me. For the next three months, I was punished for not being able to see things. My parents said acting like that was not a way to get the right kind of attention. I went to my guidance counselor at school. We researched ways vision could be affected by diet, stress, and other psychological issues. I brought my findings home to my parents to show them the doctor was wrong. My persistence paid off. Mom made another eye appointment for me with another doctor. This one was very nice. He took his time, and after the examination, said Youre not crazy. Something is wrong. Im not sure what it is, but I can assure you that youre not crazy. I want to send you to a specialist. I was so relieved to have someone believe me, I really didnt stop to think about what could be wrong with my eyes. I was also angry with my mother for not believing me. I told her she needed to apologize to me. Five years later, she still is. The elevator ride was very quiet. The expression on Moms face was one that I had never seen before. I saw fear, anger, and love all at once. The ride home seemed long, because she didnt speak. Later, she said that was because of the lump in her throat. The specialists office was three hours away. A snow storm was moving in, so Dad decided to drive us into town the night before. We arrived at the motel, and thats when the fear of blindness really hit me for the first time. I was truly scared of the unknown, and I knew my parents were afraid, too. So we played some games to pass the time. The appointment with the retinal specialist couldnt come fast enough. He did a series of tests and then sat down with us. He said I was legally blind, which meant my vision was worse than 20/200. Still, he said, I should be able to live a normal life with the exception of not being able to drive or join the military. He said I had Stargardt disease, a juvenile form of macular degeneration that might eventually take away all of my central vision. He explained there wasnt yet any cure or treatment, but some good research was being done. Meanwhile, I would have to make some modifications in order to do certain things. I could tell that Dad was worried, but he was trying to be strong. I saw a tear roll down Moms cheek. It was then I realized how serious this was. The specialist gave us his home phone number in case we thought of any other questions or had any other concerns. I took Moms face in my hands and told her I wanted to stare at her so I wouldnt forget what she looked like when my eyes got worse. Trying to hold back her tears, she held me and told me everything was going to be all right. I wondered who she was trying to convince: herself or me. Life for all of us changed that day. By the way, I went back to the first doctor and told him he was wrong. I suggested maybe he needed to think about how he made me feel, and maybe he should become better educated so he won't do that to some other kid. He apologized, but it meant nothing to me. What he did was unforgivable. Chapter 2: Parents
One time he asked me to wash the dinner dishes. I told him I couldnt, because I couldnt see if they were clean. Well, he spent the next two and half hours lecturing me. He said I could feel if they were clean, that I didnt need my eyes to do it. He told me that, when I go out on my own, there wont always be someone there to do things for me, so I had better figure it out, and that until I did figure it out, I could forget about any privileges. I thought he was mean and didnt care. Now I know he was only trying to make me as independent as possible.
I knew if I was with Dad I would be all right. He taught me the importance of being absolutely sure I recognized a deer before I pulled the trigger, and that if I had any doubt, dont shoot. It was fall, and hunting season was just around the corner. I couldnt wait for Dad to take me to get my license. I presented my hunters safety card at the store to show I had passed the course. The man selling the licenses looked like he was going to faint when my dad told him I would need a little help filling out the forms because I was visually impaired. I can only imagine what that man must have been thinking. I smiled at him and told him not to worry. I would be hunting only on our property. That week, Dad and I did some target practicing and sighting with our guns. We always had a little contest before the season actually started. My older brother, my older sister, Dad, and I would target practice to see who had the best aim. The winner would be taken out for a banana split at the expense of the others. My brother went first, then my sister, then Dad. Finally it was my turn. The target was a hundred yards away. I looked through the scope, aimed, and exhaled. I pulled the trigger and won the banana split by hitting the tack dead center of the bulls-eye! At 4:00 A.M. on the first day of hunting season, Mom made us all a big breakfast, and we went out to the tree stand. Mom doesnt hunt, because Dad says she cant keep quiet and be still. He said one year he took her hunting and told her to wait under the apple tree. When he came back to check on her, she was singing and snapping twigs off the branches. She stays home now. Anyway, since it was my first year, I stayed by Dad. Shortly after the sun rose, he saw a buck. He told me to get ready, and he pointed in the direction the buck was coming from. I found the animal in my scope. He was broadside, which makes for an easy shot. I aimed, exhaled and pulled the trigger. The buck went down, and I jumped with excitement. Dad hugged and hugged me. It was an eight point buck--a whole lot better prize than a banana split. Thats the only deer I ever shot. I still go out hunting with Dad every year, but I no longer carry a rifle. Instead, I walk through the pines to see if I can flush anything out. I love the outdoors, and especially the memories we make.
Mom has literally put her life on hold to make sure I succeed. Her sacrifices are too numerous to mention. She has gone without in order to provide me with expensive assistive technology. She has changed careers to be more available for my education. She tells me I am her strength and inspiration for whatever this world has in store. She tells me my courage is the reason she fights for what she believes in. In truth, though, she is my strength, my inspiration and my courage. Chapter 3: Siblings
The third oldest caused all sorts of chaos in our house when she was a teenager, which I think was her way of trying to get attention from my parents. She is now a responsible mother and a good friend who finally understands that our parents were doing what they thought to be best at the time. She and I are very close now. I also have an older brother who moved out when he was a teenager. He said he felt like he was in the way, which I think was just an excuse. He tried to play on our mothers sympathies, and probably would have come up with any reason he could to leave. Still, to this day he doesnt truly understand what I go through, nor does he seem to want to. My younger brother is a gift from God. One time, kids were teasing me at his baseball field, because I couldnt find a ball that flew over the fence. They were telling me where it was, but I just couldnt see it. One of them said, What is your problem? Are you blind or something? My brother flipped out and came right to my defense. He made that boy feel awful and got him to apologize to me. My family has become my security net. I know I can go to them with anything, and they will be there for me. I know if it wasnt for the love and support of my parents, I would not be where I am today. Im grateful and blessed to have them. Chapter 4: Peers
I concentrated on go-cart racing for awhile. I could still get around the track with the best of them, but I started worrying about injuring myself or someone else.
School dances were another issue. Mom always feared that the boys would shy away from me because of my condition, but that didnt happen. I had plenty of opportunities to go to the dances with a date. At first, I was still able to recognize faces, but when my eyes got worse, it became difficult. I feared I would go up to someone thinking they were someone else and make a fool out of myself. I stopped going to dances for a while because of that. Then I figured out I needed to start being more open about my needs. I should tell my date to not leave me standing alone without letting me know who was around me. And if I needed to use the restroom, I should ask him to wait outside or ask him to stay in the same place until I got back. I started realizing that, if I wanted popularity, I had to find it in a different way than most. I told my friend, the one with retinitis pigmentosa, that we needed to stick together. We would get a laugh now and then, because he could see centrally just fine, and I could see peripherally pretty well. So when we looked at something, he would tell me what he saw, I would tell him what I saw, and we would put it together. I couldnt help but feel sorry for him, though, because he didnt have the kind of family support I had. All they seemed to care about was getting a disability check from the government. They never came to school meetings, and they never tried to get him any help. My parents offered to pay for both of us to attend a camp for the visually impaired, but his parents wouldnt let him go. I think that was when I finally realized how wonderful my parents are and how lucky I am to have them. Chapter 5: School
I ran to the restroom so no one would see how upset I was. I just wanted to hide. The girls on my squad wouldnÕt leave me alone. They kept telling me I needed to understand. I definitely understood. I understood they were just as discriminative as my coach. I understood how ignorant and cruel people can be. I understood that I was not going to let this go without a fight. I protested and attempted to advocate for myself through the superintendent's office, but it was an exercise in futility. I was kicked off the squad. Most of the time, the teachers would send me to the office copy machine to enlarge my own papers, which meant spending time out of the classroom. I was missing valuable instruction, and my grades were suffering for it. My parents did everything in their power to get the district to comply with my educational needs. They set up meetings in between my regular individualized education program (IEP). They brought in experts to talk to the district. They provided documentation from my doctors. They spoke to my teachers individually and provided them with examples of proper assignment formats. Mom spent hour after hour reading textbooks and novels to me or recording them on tape so I would be able to learn. My low vision specialist provided a letter to the principal explaining that I should be allowed to wear sunglasses, hats, or visors in the school to reduce glare. The principal stopped me in the hall and removed my hat. He told me in front of everyone that I had detention for not complying with the school dress code. One of my science teachers required the students to place their assignments in a class folder on her desk. Each class had its own folder, and the label was the only distinction between them. I asked the teacher if she could use a different colored folder for our class so I could tell ours apart. She said she wasnt going to do that. She said her system had been working for years, so why change it now. I received several zeroes for misplaced work. Mom asked my older sister to take my assignments to the science classroom before school started to make sure they were put in the correct folder. The teacher told her to leave the room, but she decided to try and plead my case. For that, she received an after school detention. Another teacher told me if I could apply make up so perfectly, I ought to be able to read my text book. He told me I was just lazy and making excuses for not completing class work. I tried to tell him I had a magnifier mirror, but he wouldnt listen. I cant count the times I had to leave a class so others wouldnt see me cry. I cant count the times the teachers stood back and did nothing when the other kids would tease me about my vision. I cant count the times I called my mother to come to the school. I always tried to remain calm and explain why I couldnt see what the teachers wanted me to. I tried to explain how I needed things to be, but I felt so defeated. I thought I would never graduate, and I wondered if life was always going to be this tough. I would beg Mom in the mornings to not send me to school. I would cry that she didnt understand how horrible it was there. I didnt know it then, but Mom had been documenting every time she went to the school. She had been keeping a log, noting whom she spoke to, the date, and what the conversation was about. She had been recording all the meetings with the school board, superintendent, teachers and other school officials, all the phone calls, how long it took the district to provide assistive technology, every time I would come home from school crying, and why. My parents set up another meeting. About twenty school officials were in the conference room. Twenty of them and three of us. I could see the rage in my mothers face, as she laid out piles of teachers assignments that were not in compliance with my IEP. Still, she remained calm, as she made it clear that she had done her homework on the legalities of the district obligations to provide me with an appropriate education. Dad told them it was apparent there wasnt a place in that school district for a child with a disability. Mom gave them warning that she had been in contact with an attorney, and that we had every intention of filing a lawsuit. I saw my parents in a new light that day. They became my heroes. It took a year, but the lawsuit ended in a settlement. During that year the district provided me with a teacher at my house. My grades improved, and so did my confidence. I do miss a few kids, but I dont miss anything else about attending public school. Now I complete my assignments over the computer. Im still a student in my school district, but I do all my work at home. I have a wonderful vision teacher who comes to my house to teach me Braille and mobility skills. Completing assignments over the computer is hard, but I can work at my own pace, modify things when needed, and use my equipment without being afraid of someone making fun of me. The district has agreed that, if I complete the required courses, they will allow me to graduate a year early. They probably cant wait to get rid of me. Im proud to be a high honor student, and I know my future holds great success for me. Chapter 6: Gaining Confidence
Ive decided I don't want to have to rely on other people all the time, and I really don't need to. It's the little things I can do that make me feel good. For instance, the other day my vision teacher went with me to my bank, and I filled out my own deposit slip. I used the ATM without help. I used to worry about little things like that, and now I'm wondering why. I think Ill be able to manage most things life is going to throw at me. My teacher says it's a sign of maturity. She has also complimented me for being her first visually impaired student to go to college. I may be sounding self-important, but I just want kids who are visually impaired to know theyll be all right if they can take advantage of the opportunities. I take advantage of my Braille classes now. I take advantage of the time my teacher wants to spend showing me how to walk with my cane, I take advantage of audio book services. There is so much help out there, a person with visual impairment would be crazy to not try to learn something that will help them be more independent and more safe. And whoever cares for and teaches kids like me should be ashamed of themselves if they dont take the trouble to find out whats out there. Sure, it bothers me that I can't see very well, but I know I'm going to be all right, because I have people who care. Chapter 7: Driving
I have known since I was eleven I would not be allowed to drive. It didnt bother me too much then, and I really didnt think about it. The days before I turned sixteen, though, were a different story. I was angry and sad at the same time. I cried and asked why this horrible condition had to be part of me. When I turned sixteen, not being able to drive hit me hard, even though Mom always told me I cant throw a pity party that lasts more than one day. My parents bought me a go cart and an ATV a few years back. We live in the country, where they let me drive on old abandoned dirt roads and in the fields. One day, Mom, Dad, and I went ATV riding with my aunt and uncle. My ATV was not as powerful as my dads and uncles. Mom saw that I was having difficulty keeping up and trying to see which direction everyone else was heading. She decided to ride with me, which must have boosted my confidence, because I drove faster. She kept telling me to slow down, but I didnt listen. She screamed that we were heading for a ditch, but I couldnt stop, and we went airborne. Our ATV rolled at least three times, and we were both thrown off. My uncle had to flip his machine to avoid us, as we tumbled down the road. My aunt broke her ankle, and Mom and I had road rash all over our bodies. It was a hard lesson, but it taught me I had no right to put myself or others in that kind of danger again. Ive thought long and hard about how Ill be able to get from one place to another without a drivers license. Ive come up with two solutions: a horse and cart or a moped. My retinal specialist says if I go slow and stay on roads less traveled, I should be fine. I wouldnt be able to drive in the city, but it would give me a little independence. This is just one of the many ways Im having to learn to adapt. Chapter 8: Adapting
It was MotherÕs Day, and I wanted to do something special. I woke up in the morning and took off to the upper fields above our pasture. I love to sit there and feel the breeze and the warmth of the sun. Chapter 9: Proving Myself
Thats where horses came in. Ever since I can remember I have had a passion for the equestrian life. When I was little, Mom took me to local farms and enrolled me in riding lessons. I could ride, even blindfolded. I could feel the horse collect under me. I could feel the looseness of the reins and when the horse drove into the bit. I knew I could do this, and I didnt need my eyes. And I think it might be my visual impairment that has made me a better rider. I rely on how the horse feels to me under the saddle. I feel his shoulder lift, telling me its a good time to transition into a canter. I feel his back rise ever so slightly, letting me know he is collected and balanced. It wasnt long before I was begging for a horse of my own; and this time begging paid off. Mom and I walked my new horse eleven miles to our house. He was a beautiful bay Arabian gelding they said was too hot to ride. I named him Storm, and I was determined to make him my own. Mom found a wonderful riding instructor who took the time to listen and understand about my visual impairment. Sometimes she would blindfold herself before asking me to do something with Storm. I practiced and practiced, and I couldnt get enough. Ive tried so many times to explain the feeling that I get when I ride. Storm accepts me for myself, no questions asked. Hes freedom, independence, security, pride, a best friend, and a sense of accomplishment, all wrapped into one. Storm and I worked hard with the intentions of someday entering a competition ring. I knew I could do it. He could be my eyes, and I could feel what he needed from me to succeed. Whenever I felt a little blue about my eye condition I would go to the barn. Storm always made me feel better. He needed me just as much as I needed him. Together, we developed ways to let each other know what we needed to make our ride successful. I learned to feel his body collect beneath the saddle and how the reins felt when his head set properly. I learned by feel and by the way his mane swayed what lead he was going to pick up. We were on our way to being a force to be reckoned with! My riding instructor talked to me about riding in 4H classes. She told me I would be eligible for therapeutic classes because of my vision, but she thought I could also compete in the regular ones. I chose the regular classes, because I didnt want to take a trophy away from someone who may have a worse disability than mine. My first show was just a walk trot event at the county level, but I was still nervous. We entered the ring to the right at a strong trot. I knew the judge should be somewhere in the center of the arena. I couldnt see him, but I listened. Storm and I did everything we were told and then lined up at the end of the ring to wait for the judge to place us. First place to rider number 837 and Keystone Storm. When I heard that, I couldnt stop smiling. My first horse, my first blue ribbon! It was easy for me to find Mom in the stands, because I could hear her cheering. It was a day Ill never forget, and I knew horses would be in my life forever. Since that show, I have competed in many others in Pennsylvania and New York. One of the most memorable was at the State Fair. Storm and I practiced and practiced. I had to count his strides so I would know where I was at in the ring. It was Storm and me again with many other competitors. The ring seemed crowded, but Storm knew what needed to be done. I could hear Mom cheer each time we passed her. Then it was time for us to maneuver a pattern of cones placed throughout the arena. I memorized the pattern beforehand and knew just how many steps Storm would have to take. The judge called my number, and I took a deep breath. We nailed it. I was so proud waiting in the line up, I didnt even care what place we would get. And it was another blue ribbon! The patterns are very difficult to complete. It took many hours to figure out the strides and steps, and each arena and pattern are different. I wanted to quit competing in those classes, but Mom wouldnt let me. She contacted the different shows and asked if they would allow any accommodations, such as a receiver, or if I could walk the pattern before the event. Some were willing to accommodate, while others felt it may be perceived as cheating. I have had many rewards and successes with Storm and other horses I have since acquired. At age sixteen, I own my own ranch, where I provide beginner lessons for children. I offer the service of breaking and training horses, and I have been asked to assess other horses. Storm and I have placed top ten in the state of Pennsylvania, and I have earned enough points with another gelding to go on to the national level. I have found something I love to do and am really good at, despite my condition. For years, I did my best to hide my visual impairment. I didnt want people to know, because I didnt want anyone to make fun of me or think differently of me. And I especially didnt want their pity. But Ive changed. And I think Ive changed, because Ive learned that, if I want to be successful, I shouldnt worry so much about what someone else may think. I know Im a good person. I know my visual impairment isnt my fault. And I know what I want in life. I want to be a trainer/breeder, an equine massage therapist, a national competitor, and I want to provide artificial insemination services. I plan on expanding my ranch by offering things like boarding, training, camps for inner city youth and children with disabilities, rodeos, and carriage and sleigh rides. And I know that, to accomplish all of this, I cant hide my impairment. Chapter 10: Coming Out
It was an exciting show. I think its the biggest one in the state, and Ive been told its an honor just to make it to that level. The type of seat I ride with Storm is called saddleseat. I know he really doesn't stand too much of a chance against the Saddlebreds because they are the true saddleseat horse. Where I live, however, because Storm is an Arabian, he would not even get looked at in a hunt seat class in 4H. The judges look at the quarter horses and the paints. So thats why I put Storm in the saddleseat classes. Anyway, I had made it to State in two different classes: pleasure, which is about the horse, and equitation, which is about me. I started to panic before the show when Mom read the pattern to me for my equitation class event. But at practice we paced out the steps and strides I would have to take to be in the right place in the arena. I had to enter the ring at a strong trot to the right, continue up the rail, and stop just before the first curve. Then I had to stop, acknowledge the judge, walk Storm to the center of the ring, stop, acknowledge the judge again, pick up a canter and circle to the right, stop at the center again, acknowledge the judge again, pick up a trot going to the left in a circle, end up at the other side of the arena, pick up a counter canter (which is an incorrect lead), stop at the end of the rail, acknowledge the judge again, and return to the line up. Acknowledge the judge? I couldnt even see the judge! I decided I would just smile and turn my head entirely around the arena instead. Hopefully, that would count. My first event was the pleasure class, and the size was almost double from last year. Storm and I did our thing, and I blew the lead on the final canter. I took only 11th place, which was the same as the year before. Then I had three minutes to change out of my pleasure class attire, which was a daycoat, vest, and tie. I had to change from that into my equitation attire, which is sort of like a formal tux with cummerbund and bow tie. Mom held Storm while I changed, then I entered the ring. I was shocked that the class had tripled in size since last year. Mom purposely didnt tell me before, because she knew I would just work myself up. Another horse cut me off, and Storm apparently didnt like it. He picked up speed, passed the culprit, and kicked him three times. Hes never done that before. I didn't think I stood a chance after that, but I went on with the regular part of the class. Then they asked us all to line up at the one end of the arena to begin the pattern. Each horse and rider had to do the pattern one at a time. The judges nod was the signal to begin. Well, I couldnt see the judge, let alone see him nod. So Mom and I had developed a code word she would yell from the stands when it was my turn. This year, the signal was "Cody. Storm and I completed the pattern, and everyone from my county cheered loudly. As they began to call the placings, I didnt expect to get anything, but the judge apparently didn't see Storm kick the other horse. We received tenth place which, again, was the same as the previous year.
I know Storm and I placed only tenth, but the pride I felt was overwhelming, and the acceptance I felt was even more so. I dont want to sound boastful, but some of the horses and riders that placed higher than Storm and me were professionally trained, and we beat some of the others that were professionally trained, too. Coming in tenth in that group was a great feeling. The best part of all, though, was the kids coming up to me afterward and making me feel so worthwhile. They didnt ridicule or pity me. Actually, I think I might have somehow made them feel proud, too. That boosted my confidence. And it has also confirmed something a wise friend once told me. Success is addictive. The more you get, the more you want. And I now know that courage and hard work are the only ways Ill be able to do that. College is in my near future. I have been accepted to a college in West Virginia pending my high school diploma. Im still scared of the unknown, but I know I can face it as long as I have the support of my family and the will to succeed. Chapter 11: Funny Moments
I would also play a game with my friends to show off my good sense of hearing. Better hearing is sometimes a benefit of vision loss in kids, but its more of a necessity than a gift. My friend and I would close our eyes and I would drop a coin on the floor. If my friend could find it before I did, she could have it. If I found it before she did, she would owe me the same amount. I always won, usually winning enough change to get an extra snack now and then. Sometimes I see things that arent really there. Ive been told those are phantom visions caused by a condition called Charles Bonnet syndrome. At first it frightened me a little, but its harmless and pretty common in visually impaired people. The images are always of something beautiful, whether swirling lights or lovely ladies. I have fun with it, because I have convinced my little brother that I can see ghosts. Every night before he goes to bed, he asks me to check his room for them. Sometimes I tell him there is one, but its an angel ghost that wants to be there only to make sure he has good dreams. When I friends come over, we often go for an ATV ride. They always let me drive, because they say that its like going on a carnival ride. You know youre going to be all right, but theres that thrill hitting the bottom of your stomach when it looks like you might run into something. Weve given my best friend the backseat driver award. She always tells me if I am getting too close to the edge, or when to turn left or right. If she tells me to slow down, and I dont, she clobbers me. But even with her sometimes painful help, Ive hit a few things. Last fall I took out my uncles hunting target. I also ran into the back of my fathers 4-wheeler and broke out his tail lights. I remember that really well, because I had to pay for the damage. Many times, I have been out in public and have run into people or religious groups who want to pray for me. They call it laying their hands on me. It makes me uncomfortable, especially when I dont know them. I believe in God, and I do believe in people who can heal, but sometimes it just makes me uncomfortable. So I wondered what I should say the next time this happened to me. Of course, No, thank you came to mind, but being a little devious, I had another plan. Mom and I went to the mall to do a little shopping, and we were approached by a religious group asking if they could pray for me. I politely said they could, which pleasantly surprised Mom. Then, after they did their thing, I opened my eyes and yelled, Oh my gosh! What did you do? I cant see anything now! Mom, where are you? Help me! It was priceless. The people were apologizing, and a crowd started to form. They didnt know what to do. I know it was mean, but you have to admit, there is some humor there. Mom wasnt very happy with me, but we shared a good laugh when we hit the parking lot. The next time, when I was being prayed over by a young man, Mom kept poking me in the ribs. She thought I was going to play my trick, but I surprised her and simply thanked him. Afterwards, she told me she was glad I didnt embarrassing him. I just smiled at her and said, No way. That guy was cute! Being visually impaired, I sometimes rely on a sighted guide to help me get around. While we were at the State Fair, Mom and I went to a restaurant for dinner. After eating, we stopped by the restroom. I let her lead the way, which was a big mistake, because she accidently led me through the wrong door. We were about five feet inside when she said, Oops. Kimber, this is the mens room. She managed to apologize to the occupants and blurted out that I was visually impaired, so not to worry. I couldnt see anything, but Im sure my face turned bright red. Mom and I laughed all the way to the parking lot. Now, every time we use a public restroom, I never pass up the chance to ask if shes sure its the one with ladies in it. Okay, one more story. One evening, just before dark, I looked out the back door and saw our cat sitting on the stoop. Thinking she must be hungry, I put some food out for her. When I bent down to pet her, something was wrong. She just didnt look right. I leaned closer and saw that I was petting a wild raccoon! In that totally cool way I have, I screamed really loud and slammed the door. It was not one of my most shining moments. Chapter 12: Finding My Stride
Having Stargardt disease is very hard to deal with, but its not the end of the world. When I was a little girl, I knew my disease wasnt catching. What I hadnt yet learned, though, was that how I handle it could affect everyone around me. Now that Im older and getting ready to be an adult, Im learning how important it is to make those effects as positive as possible. I hope this first part of my unfinished story will be a big step in that direction.
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