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Willie's Story

Before you read Willie's Story I want to let you know that it is a pretty long story. But it is definitely worth the time it will take for you to read it. Please do not let the length of the story scare you away.

There is a reason for this story to be told, but that is something you will have to discover for yourself. Willie weighed 3lbs 7.25oz when he was born, ten weeks premature, on January first 1989. He entered the world without a heart rate or respiration. Within two hours of his birth he had a transfusion.This is Willie at one week old. He weighed 3lbs 7.25oz when he was born, ten weeks premature, on January first 1989. He entered the world without a heart rate or respiration. Within two hours of his birth he had a transfusion.When he was five days old I held him for the first time.The nurses wrapped him in three blankets to hold all the wires in and to make him big enough to hold. I looked down into that tiny little face and thought, "My GOD, this is my son." The battle to hold myself apart from him was over, I had lost myself in his eyes. Willie came home when he was four weeks old. He had an apnea monitor and heart monitor, but he was breathing on his own. When we weighed him just before leaving the hospital, he was up tp 4 lbs 9 oz. He was dressed in doll clothes because it was all we could find to fit him. But he was HOME!The nurses wrapped him in three blankets to hold all the wires in and to make him big enough to hold. I looked down into that tiny little face and thought, "My GOD, this is my son." The battle to hold myself apart from him was over, I had lost myself in his eyes. Willie came home when he was four weeks old. He had an apnea monitor and heart monitor, but he was breathing on his own. When we weighed him just before leaving the hospital, he was up tp 4 lbs 9 oz. He was dressed in doll clothes because it was all we could find to fit him. But he was HOME!This is were the hard part starts. Willie had cerebral palsy but we didn't know it until he was 22 months old. Since Willie had been premature we didn't worry too much when he didn't do things that other babies his age could do. We thought that in time he would "catch up " and be fine. When he was six months old he was enrolled in our local early intervention program in hopes that some physical therapy, speech therapy, occupational therapy and the "right" kind of stimulation would help him develop "normally". Willie couldn't sit up, roll over, hold his bottle or toys or say any words. His legs were very tense and always crossed at the knees. He cried alot and when he wasn't crying he was fussing. I just thought that I had a cranky baby. But.......... On Thanksgiving day 1990 Willie had his first grandmal seizure. He was rushed to the emergency room where he was admitted to the hospital's pediatric ward so that a CAT scan, MRI, spinal tap and various blood tests could be run to determine the cause of the seizure. The results were devastating to my, then uneducated, mind. The diagnosis was partial agenesis of the corpus colosum. Fancy words meaning that Willie had a hole in his brain. Part of his brain tissue had never developed leaving a small hole in the center of his brain. His pediatrician sat with me and explained to me that my son had cerebral palsy. A condition that is permanent. Only time would tell how to what degree the cp would affect him. It was also determined that Willie had epilepsy, which caused the seizure, and he was put on phenobarbital to control any future seizures. The change in my son was amazing. The phenobarbital controled the seizure activity in his brain. He began to do things he had never been able to do, he stopped crying all the time and began to laugh. His smile was the sweetest thing I had ever seen. Within weeks he was rolling over, holding his bottle and toys and babbeling away. I still didn't know nor did I want to face the truth. By this time your probably wondering, where is all of this is going? What happened to Willie? When do the pieces come together? Well I'll tell you. This site is about cerebral palsy in all its many forms. Willie is one of millions of children born with this condition. But there are many more who develop cp after severe head trauma, illnesses that effect the brain tissue, or an abundance of other ways. This site will attempt to educate those who wish to learn, provide emotional support for those who need it, answer questions for those who ask, and tell the stories of some of the sweetest children in the world. If I still have your attention, if you are one of the few who have compassion and not pity or if you just want to read the rest of the story....................... Look at this little boy. I mean REALLY look at him. Do you see it? "See what?" Why the disability of course! Don't you see it? Classic 'spastic cerebral palsy'......................... isn't it awful? NO of course it's not! You can't catch it, you can't feel it, you can't smell it and in many cases you can't even see it. This is Willie today. He is nine years old. He attends second grade in one of our local elementary schools. He loves sports (football is his favorite), video games, power rangers, teddy bears and school. His favorite subject is math. Is he so very different from other nine year old boys?.......... The answer to that is a resounding YES! You see, Willie is going blind in one eye. In the not so distant future Willie will be classified as legally blind. Willie also has severe asthma due to damage done to his lungs when he was on the respirator. At this time, he uses two inhalers and a nebulizer to keep him breathing. Willie still has epilepsy and experiences petitmal seizures a number of times a day. Most of Willie's school work is done on computer because he has alot of difficulty controlling his hands to use a pencil. The biggest thing that is different about Willie is that he will never walk unassisted. Willie wears braces on his legs called 'mafos'. He also uses forearm crutches. It is the crutches that support Willie, without them he can't even stand. Willie didn't take his first steps until he was five years old. Many things have happened between the day Willie was diagnosed and today. If you continue on through this site you will learn about those things and hopefully you will learn alot more about cerebral palsy. Willie continued in the early intervention program until he was three years old. He was still having grandmal seizures at that time and each seizure meant a stay of at least over night in the hospital. Willie seemed to have more seizures when he was separated from me. He would throw a tantrum whenever he couldn't find me, these tantrums seemed to trigger seizures. So it was my choice not to enroll Willie in school right away. He was only three after all. It was a good choice. He got physical therapy at home and learned gradually to be independent of me. When Willie was four and a half I decided that the time had come for him to start school. I contacted our local school district who put me in touch with the special needs child study team. When I called the team I was immediately accused of being a horrible parent for not enrolling him earlier. I was not asked why I had chosen to wait just told that I was an awful mother. I was also told that they would not be able to evaluate Willie for placement until February (it was then August). I hung up the phone and looked up the number for united cerebral palsy. It was to be the first of many calls to them. Well, within an hours time I had an appointment to have Willie evaluated the next week. He started school in September. Willie was placed in a school for the physially disabled. The school that had been chosen was called the githens center. It was a wonderful 'not for profit' private school. their ultimate goal is to ready these children for placement in 'regular' schools and 'regular' classrooms. But they were located outside of our district. That meant a thirty minute bus ride to and from school every day for Willie, and he was only going half day at first. Willie remained at Githens center until november 1997.Willie greatly enjoyed attending the Githens Center. He received intense physical therapy as well as other therapies. He made friendships that have lasted through to today. Out side of school Willie was beginning treatments that would hopefully straighten his legs which were continually bent at the knees and hips. His feet were pointed down all the time. One of these treatments was castings. It consisted of holding Willie's legs as straight as we could get them while a technician put casts on his legs. These casts extended from the base of his toes to the top of his thighs. These castings were meant to be four weeks on one week off. The treatments were supposed to stretch the tendons in Willie's legs enabling his legs to straighten. That was how it was supposed to work......... What it actually did was torture my son. (I know this treatment has worked for alot of other kids) For Willie this treatment was EXTREAMLY painful. He cried non-stop, slept in twenty minute increments, and had to be put on pain killers at the age of four. We went through two castings.Our results were nill. I finally said "no more". The Dr. wasn't happy with me but I saw no reason to continue putting my son through all that pain for nothing. The Dr. couldn't (or wouldn't) tell me if Willie would ever stand or walk, with this treatment. You see Willie couldn't stand or walk or even crawl on his hands and knees. He did what they call commando crawling, where he pulled his body along behind him using his elbows. It was at the end of the second casting that Willie cought the chicken pox Now under normal circumstanses when your child get chicken pox you don't really worry. It's not a major illness just an uncomfortable one. But for children with neurological disabilities (which cp is) it can be very dangerous. The pediatritian kept a close eye and Willie and we made it through. That winter Willie got his first case of viral pneumonia, it was also the first time anyone had said 'asthma', or 'lung damage'. It was explained to me then that as Willie grew so would the damage to his lungs. It was a condition that would only worsen with time. By that time Willie had grown some and weighed 28 lbs, still awfully under weight for 4 years old, but growing. In November of that year (1993) we went to the Alfred I DuPont Children Hospital for the first time.We had already been to different hospitals in new jersey and Pennsylvania. Five of them in all. I finally decided to try DuPont even though it was alot further away than we had been going. It took over an hour to drive there. But the distance was well worth what we found there. We found a children's hospital that didn't feel or look like a hospital. We found the most caring staff of professionals that I have ever come across. And I found a doctor who was willing to lay the truth completely on the line for me. No matter how hard it was for me to face. After four hours (which we were told about in advance) of medical history taking, x-rays, neurological and orthopedic exams I finally knew the truth about my son's condition. The bones in his legs had begun to warp. The tendons were were so tight that they were pulling on the bones causing the bones to bow out or curve. The curve was getting worse as Willie's body tried to grow. I was faced with the fact that if surgery wasn't done soon to relieve the tension on the bones, the curve would become so bad that Willie would never walk at all. I was also facing the truth that there was no guarantee that Willie would ever walk, with or without the surgery. The decision was mine. Would I allow my son to under go painful surgery for just a possible chance at walking or would I allow his legs to become even more useless than they already were? Could I knowingly keep my son in his wheel chair for the rest of his life? Was it fair to put him through all of that pain for just a chance? Would he some day hate me if I said no? The decision was even harder knowing that Willie could have a major seizure during the surgery. All of these things ran around and around in my head. It was the hardest decision I ever had to make.As I have already said, the decision about Willie's surgery was the hardest I have ever had to make. But I chose to go ahead and have it done. The Dr. assured me that even if the surgery didn't allow Willie to walk he would atleast be able to help us move him, which he currently couldn't do. The surgery was schedualed for Febuary 15, 1994. Willie was five years old. The Dr. said that the surgery would take aproximately two hours with another hour in the recovery room. Then about three days of rehab and he could go home. With children who have cp things very rarely turn out as expected. The surgery ended up taking four hours. It then took two hours in the recovery room because Willie didn't want to wake up. I was a total basket case. Every nerve I had was on edge. When I finally got to see Willie again he looked awful. His legs were in casts from toes to knees, he had incisions on the tops of his thighs, the backs of his knees and either side of the groin area. Willie had a total of ten incisions, there were ones under the casts that I couldn't see right away. You could see the pain written all over Willie's face. All I could do was cry. Willie was then taken to his room where I would be boarding with him for the entire stay. It became clear very soon that Willie's system was very unhappy with the surgery. He began having heart problems again. Every time he would fall asleep his heart rate and respirations would begin to drop. We ended up putting him back on the heart and apnea monitors. I would have to wake him whenever the rates would fall too low. Willie also wouldn't eat. He lost ten pounds in the week we were there, he only weighted 33 pounds to begin with. The physical therapy team at DuPont worked hard with Willie and with me. They showed me how to stretch him and to get him to move muscles he had never moved on his own before. They showed him how to stand and hold on to a walker. Eight days after entering DuPont we were allowed to go home. Willie was still in a great deal of pain. He was taking codiene by that time. He had been on morphine for seven days. He still didn't want to eat and was still loosing weight. We had an aide come to the house twice a day for two hours each time. She was great with Willie. She fed him each hour. She also helped with getting Willie up in the morning and getting him ready for bed at night. Willie still had the casts on and had to wear special braces at night to keep him legs straight while he slept. Willie's at home, physical therapist, continued to work with him three times a week for two hours, and since he had returned to school five days after we got home, the school pt worked with him every day for 30 minutes. The aide and I stretched Willie as often as we could get him to cooperate. Willie also returned to DuPont once a week for therapy there. Within a month Willie took his first steps. His at home therapist had said that if Willie ever walked, it wouldn't be for long, because he would quickly learn how to run. This man was very right! By the end of two months Willie was running with his walker. The casts were removed after eight weeks and Willie was put back into mafos. Willie began using crutches about three months after the surgery. Now he could run even faster. Willie was now walking which enabled me to finally potty train him. Yup that's right, five years old and still in diapers. It is not easy to potty train a child who can't walk. In fact due to the increased muscle tone in Willie's lower body, potty training him was extremely difficult. He would have to try to keep certain muscles tight in order to support himself while relaxing others (all things we do without thinking about it). But he did manage to learn though like many children with cp Willie still has accidents caused by muscle control. The years have sped by. Willie out grew the home therapist so we relied on the therapy he was getting five times a week at school. Willie learned to climb stairs and ladders and he learned how to ride a bike. Not a regular bike, he can't support himself enough for that. He learned to ride a rifton bike which looks like a large tricycle with a back rest and straps to hold him securely in the seat. He rode the bike in the Special Olympics in the summer of 1997. I can't describe the feeling of pride, that I had, watching my son ride a bike, just like any other child. He was so proud of himself. I will never forget that day, it was one of the big ones. Willie came home the winner in six events. But the difficult days are not behind us. We faced one of the toughest this past year, and it had nothing to do with Willie's health. We had been trying for three years to get Willie switched over to a regular class room in one of our local district schools. The child study team had given us one reason after another for Willie not to be placed in inclusion. 1. He needs assistance going to the bathroom. 2. We can't hire personal aides. 3. There is a possibility that Willie has a learning disability. I was offered, year after year, the self contained multihandicapped room in a school that our district uses as a dumping ground for every child with a mental or physical problem. No inclusion, no mainstreaming, no time spent with able bodied average intelligence children. The district went so far as to have a psychologist watch Willie and speak to him, the problem came when the man returned with the findings that Willie was "too delicate" to be schooled with non-disabled children. They also had a learning consultant test Willie. The man used normal sized print to administer the tests, even though it had been in Willie's records since he was four that he had a visual disability. When I pointed out that the results were not fair and that the entire test results should be thrown out, they retested him by giving him the same test but allowing him to use a magnifying glass to look through. At this point I lost all patience with the district, with the child study team and with the case worker in charge of Willie's case. I again called United Cerebral Palsy. They assigned an advicate to Willie's case and I began educating myself on disability laws. Well to make a complicated story simple, sufice it to say, that it took several meetings, alot of yelling and finally a call to a lawyer about a three million dollar law suit and a call to the newspaper. I was asked to sign a paper stating that I did not agree with the child study teams assesment and that they were going against their better judgment and placing my child according to my wishes.But Willie was finally schedualed to begin regular second grade in a regular classroom the day before Thanksgiving 1997. Willie has been doing just fine. He has been bringing home good grades, making friends and doing all the things normal kids do. He does have a full time aide at school to help him with toileting and to write for him when the task requires speed. But he is HAPPY, LEARNING and ENJOYING IT! For the most part Willie uses a computer for doing school work and all of his papers are enlarged to enable him to see them but that is more than the child study team ever thought he would do. Willie's story isn't done yet, he has many years ahead of him. Some will be very hard others we will breeze through and I am sure of one thing...................... Willie will be anything he wants to be!

this storie was written by Mother Linda Toplyn, Willie's Mom!!! She has some great stories and information on CP int their Homepage!!! Willie's Story: the Homepage!