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Yesterday, Lele ended his study in Nanjing Xuanwu District special education school for the first week. And new schools compared to the 7 year old boy still prefer the original public primary school, but he can not go back.

 

Lele in the classroom is not "good as gold" - at least in the teachers, students and parents in the eyes of the case. He likes to remain seated, often disturb the students, even in the classroom piss ...... In fact, this and he was suffering from an extremely rare disease. Lele Nanjing is the only mucopolysaccharides patients. Cruel that so far the disease around the world have no effective treatment of the parties.

 

Worried about education, employment pressure facing the future of their own children, parents of other students aside initial sympathy, joint together, requires the "disruptive students" turn away. Thus, a relation to moral and tomorrow's "war", in both parents, middle school started.

 

Newspaper reporter Gu Yue Fei

 

An unexpected fall, the children found suffering from an incurable disease

 

Suffering from mucopolysaccharidosis, the body lacks an enzyme

 

Metabolism can not be normal, organ damage in patients

 

7-year-old child,rayban, was sentenced to 15 years but may live

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On Friday, reporters arrived Lele home, this little boy to a special school to go to class. "It's also terrible than leukemia, leukemia'll bet, and the opportunity we have not even bet!" Lele's father Tang introduced from mucopolysaccharidosis terrible.

 

Mr. Tang's father beside supplement, but not long sit, 78-year-old then got up to the back room. Soon, he took out two framed pictures, "we are talking about is this little guy," the old man look fondly looking at the photos grandchildren.

 

This is a memorable boys: the first is particularly large, prominent forehead,louboutin chaussures, black-rimmed glasses, shyly looking at the camera. By the way, the child's head also wearing Dr. cap. This is when a child photography, most parents would choose props. Even suffering from an incurable disease, but the family still hopes Lele and peers to have the same tomorrow.

 

At least two years before, except Lele speak a little later, the difference is not large, and peers. May 22, 2006, because of an accident a few days ago Lele fall, Mr. Tang took him to Children's Hospital in Nanjing film examination. Earlier give the child a bath, my mother has been found Lele back spine has a central oval mass, the family of the child's illness faint worry.

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An hour later, the doctor hurriedly past couple shouting, solemnly asked the couple's physical condition, medical history of both families,moncler milano, and to seek the views of parents to give their children an additional postural film project, Mr. Tang agreed. After another tough one hour, Mr. Tang was cried the doctor's office, the result dazzling film to read, "mucopolysaccharidosis" list.

 

This is a disease that most doctors never seen, let alone on the treatment of. Constitute the connective tissue mucopolysaccharide such as skin, bones, ligaments and other structures supporting the main component of our body. Because patients lack an enzyme that makes the metabolism of mucopolysaccharides can not proceed smoothly, so as to gradually damage the patient's organs.

 

Mucopolysaccharides children in infancy with normal child is no different, but generally after two to three years old, will gradually appear special rough face: the head is larger than normal, large tongue, thick lips,louboutin chaussures soldes, and abdomen due to hepatosplenomegaly loose and prominent organizations, joint stiffness,ed hardy bracciali, smart gradually degenerate ......

 

Currently, none of the world to find an effective treatment of mucopolysaccharidosis of the party. Developed a way to use more bone marrow transplant, but generally occurs in the patient's condition before surgery began. After symptoms appear, doctors mostly recommend to abandon the treatment, because even take surgery, the chances of success are minimal. And because high surgical risk, the children on the operating table, the parent is likely to lose him this forever.

 

At present, the domestic only Beijing, Shanghai, Guangzhou and other places can be admitted mucopolysaccharidosis. With three children ran removed a year later, Mr. Tang had also expected to "gamble", but because the symptoms Lele has emerged, missed the best timing of surgery, Tang had to recognize the reality of pain, abandonment the child's treatment. Doctors said mucopolysaccharides patients rarely live beyond 15 years old.

 

Briefed reporters on the bow, the Tang tears in your eye. He worked in a large company in Nanjing, and held important posts contain import and export business. During the day, Mr. Tang spoke fluent English and international counterparts to negotiate, control of the lifeblood of the company; and the evening at home, in the face of their own helpless son. Huge contrast life, so Tang's eyes lost their original strength of spirit,louboutin pas cher, when talking to people, most of them looked down at his material, rarely confront each other's eyes.

 

Tang's work unit in Jiangning daily commute have a very long time. In recent years, on his way home from work, the middle-aged men often grief Nan Yi was crying all the way.

 

He became "the most unpopular" pupils

 

Due to illness every half hour to urinate

 

Unable to lift his own pants, unable to control "hyperactivity"

 

7-year-old boy, complained, "We can not do the class"

 

Lele totally do not know that the great people of sadness. In this 7 year old child's world, no rules, no face, but do not know how delightful. Saw the thermos and a power outlet, Lele sometimes unconsciously touch, for these dangerous items, the little boy was not afraid of instinct.

 

He was shy, timid,moncler shop online, like a clean slate in general. On the way home from school, Xuanwu District, special education schools, Lele listen to my aunt said the family came a reporter uncle, the little guy is interested, he can not wait to go home, while climbing stairs, she asked her aunt: "The uncle is not also wear glasses "

 

Lele's home on the third floor, in spite of their parents has a good job and income, but because these years to treat the child, has a family of three also, and more than 70-year-old grandparents huddled in an old house. On the same floor, four families and opened the door of a relative, Lele home is easy to recognize, the other three households are high-grade anti-theft doors, but only his family was on the old iron gate of the 1970s and 1980s.

 

The door opened, a 1.2-meter-high, wearing glasses boy standing in the doorway, do not force yourself to look at Lele Reporter bulk and prominent forehead. Little guy with shy eyes looked under the bridge of the nose glasses reporters, then quickly out of the way. Lele listen to my aunt's instructions, whispered greeting: "Uncle Good!" Later, he found a remote control car door on the stool reporter brought the little boy suddenly rushed up: "wow!" - In addition to short stature and a half head outside, it seems, there is no difference Lele temperament and age children.

 

After spending three years in kindergarten carefree time, last September, entered the home near Lele designated primary admission. Tang did not hide the child's condition, he will be the child's condition and treatment written in a written statement provided to the school. He said he does not expect children to learn how much knowledge, but hoped that his son can have a full life experience. Like a normal child like school, is regarded as Lele Tang life experience is the most important part.

 

Father beside nodded yes. Lele's condition when diagnosed, the face of the whole family crying,occhiali da sole, the veteran said: "Since he came into this world, the need to make our heart, to treat him!" Since then, "treat" became the family Lele treatment principle.

 

Lele assigned a grade class, because of short stature, he sat in the front of the classroom. But the school did not take long, Pick Lele grandfather school teacher would receive complaints: Lele often left their seats, still in the classroom urinate, seriously affecting the teaching order. In order not to let Lele class time to urinate, he is not allowed to drink water every morning, breakfast bread, bread rations like the majority, but to little avail. When the shuttle Lele, grandfather often told: Today in class, Lele and peed in the classroom.

 

Thus began the dwarf a poor little boy, it seems like more and more from students and teachers. After school every day, and saw my grandfather to pick Lele, naive students will twitter "complain": "! Today Lele has criticized the '' take your pants off, he ran full classroom, and made us no way to class," the teacher is He is angrily told the elderly.

 

Many people do not know, urine is actually no way to control Lele. Mucopolysaccharidosis a direct expression is urinate more, painfully Tang explained, almost every half an hour, we must urinate once Lele, 40-minute lessons per session, for Lele indeed seem a bit long.

 

As a classroom full of kids running pants off, that is a greater misunderstanding. Lele Tang took the hand to reporters, it was a pair of inwardly bent can not be straightened hands, because mucopolysaccharidosis, Lele particularly severe carpal tunnel syndrome, "This is not even to mention trousers hands had no strength, He could not intentionally take your pants off. "

 

Lele illness no waist, Tang determine the child's pants fell down, and He does not bother to mention, so the students thought he was bullying. As Lele run a classroom full of bare buttocks, understand his son's father, judge: It may feel lonely and Lele related to child no complete expression, but there are aspects of emotional communication needs, a classroom full of run finally attracted the class attention, Lele probably take the class usually difficult to obtain in the presence and identity.

 

These outsiders do not understand patience. In the classroom, slowly, from the first row of seats Lele moved to the last row.

 

Parents of other children's boycott requirements Transfer

 

His "trouble" attracted other children's parents discontent

 

Once parents let his father find any

 

7-year-olds, normal IQ but only to special schools

 

Beginning last year in November, in order not to affect other people, Lele only a half day every day. Afternoon home, grandmother to teach the language, a retired aunt to help teach mathematics.

 

Grandpa had to find the school, expect to be able to read with, but was rejected by the school. Lele's "troublemakers" did not stop, therefore, parents, schools contradiction Lele parents and other students become more acute.

 

Eventually, on October 17 this year, focus on the outbreak contradiction. 15:00 the same day, Tang was informed of the principal, that is to communicate with the parents and seven or eight under, but came to the school conference room, found the class 29 students, in addition to a few busy parents, but to the 24 Parents of students.

 

One into the conference room, Mr. Tang feel the unusual atmosphere, he said he was apologetic to go, after all, Lele affects everyone. After the president's remarks Background, Tang sincerely introduce Lele and his suffering of mucopolysaccharidosis to all parents - he said he does not expect to get everyone's sympathy, but at least be able to win some understanding.

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Tang did not say a few words, and soon, a matriarch sitting next president interrupted his tone very simply: " We are not here today to listen to them, we want to hear how to do" "You do this to us Children unfair ...... "" Our daughter is a good student before, now falling powerful performance ...... "" Your child does not have studies and employment pressure, and our children have; you put the child on the side,hogan sito ufficiale, too selfish ...... "" From tomorrow, no longer allow (Lele) into two (a) classes, can not afford to drag our kids ...... "

 

As bombarded, matriarch several turns statement, every word let Tang pins and needles. So far, the parents will feel more like Tang struggle sessions, site he stubbornly responded: "You want commitment, how could I give you what it promises!" But in the end, when the president announced several meeting comments to the effect that After Lele will not be allowed into the classroom, the school will provide one reading to school etc. Lele, Mr. Tang hastily promised target of public criticism, he anxious to flee the scene, "do not want to stay for a minute."

 

Special education school became Lele no choice. Earlier, the president and several contacts, the principals said: "In order to Lele happiness,chuteira society asics, special school may be the best place for him." And said that principals Xuanwu District special education schools is their classmates, he can learn presentation .

 

However, special education schools is not want to go on into the. Schools need to provide proof of disability and intelligence, in addition to a disability, students are enrolled in schools IQ of 70 or less. But Mr. Tang took the children in Nanjing Brain Hospital to do the test, Lele's IQ is 97,woolrich negozi line, does not meet the special school into the school conditions.

 

Lele to finish after IQ tests, Nanjing Brain Hospital doctor Chen Tang couple aside, vocal meal "swearword": "Children IQ is no problem, you do the parents, why should give him wearing such a hat "Stand hospital corridor, stronger Tang fighting back tears pressed.

 

Under the collective parents said to "strike" the pressure, Xuanwu District Board of Education involved in the matter, and eventually coordinate Xuanwu District special education school "everything", Lele enrolled in school. Starting from last Monday, Lele follow school third grade students enrolled, the class has five children: two autistic children, plus two children suffering from cerebral palsy mucopolysaccharidosis Lele.

 

Although there is no self-esteem and logical analysis capabilities, Lele or perceived differences between the two schools, a day before going to sleep the previous night, he would let her mother the next day ready for textbooks and red scarf, but only on the special school for a week class, Lele no longer clamoring to go to school, even one day he said to his mother: "I do not want to go to school today."

 

Related Lele father is not all painful memories. Experts, children suffering from mucopolysaccharidosis have some special talent, he will be concerned about the things most people do not pay close attention. In addition to the map,cinture burberry, poetry outside interest, Lele off particularly interested in the most recent water bottles, six bottles at home, he would give them one sorted according to their own standards. No water bottles in the water, Lele always the first to discover, he told his father Le Diandian:! "Dad, there's a bottle hungry"

 

Parties say

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■ other students parents

 

Although he did get rid of a bad lesson too harsh but our children how to deal with the academic pressure

 

Other parents of collective opposition is Lele leave primary fuse. Parents say the same for the parents, at the beginning very sympathetic, but then the kids' often on good course ", taking into account the child's future academic pressure facing, I hope parents can Lele thoughtful consideration, both to Lele a better place, is also the other students a quiet learning environment.

 

In the two sides deadlocked on the occasion, parents have joint letter to the Nanjing Bureau of Education. In the letter, the parents say, when most start Lele assigned to their children in the class, his class, many move on to everybody caused some impact, but after all parents, "one can see that the poor child looks , always feel that if let him go too harsh, so say wait and see, maybe then he would have been better. "

 

Starting from the first grade next semester, after several rounds of consultations, Lele every morning only to half a day. "But such a solution and did not play any good effect," the parents say, when Lele class still noisy, sophomore even worse than one year, "every day we parents hear the most is that children return After the family told us that today we are not any classes on the finish, because Lele and wailed in the classroom. "

 

Parents who find school leaders so many times, and gives let Lele transfer, placement and other recommendations, "After all, our children in the future will face tremendous academic pressure. If the time-based primary school did not play well, how we can face the future to the fierce competition in the community. "

 

■ Principals

 

Reluctant to give every child but is a child or for 28 children, a dilemma

 

More than 20 days ago, "Lele event" wrangling in school, because the parents talks collapse, and some parents even to "strike." The school principal has repeatedly expressed a "dilemma" situation when the interview with this reporter. He said that this in fact is a child in the class and 28 children right balance.

 

President introduced admissions last year, the school had been informed of the special circumstances Lele, consider the principle of "do not give every child", the school gave Lele issued a letter of acceptance. But I did not expect Lele enrollment will lead to so many things to come later.

 

President introduced Lele there are several questions: in the classroom to urinate, sometimes school Shihai play "Little Sparrow"; often inferior, even out of the classroom; students often to borrow something, etc., affect the study.

 

Principals said teachers have to reflect on these issues more, and said that because a person Lele, resulting in the class curriculum can not be completed on schedule.

 

He said the school for Lele's condition is very sympathetic, but not because of a child and the other children in the class. Some parents and therefore to the Nanjing Bureau of Education complaint, which makes the school very difficult. Principals did not explain the reasons for parents to read with not allowed, but said it would Xuanwu District Board of Education under the leadership of, and properly solve this problem.

 

■ Lele father

 

Just want to let children experience the entire process of life do not want to let his short life full of blame

 

For why insist that children in normal primary school enrollment, Tang explained:. "Just to let children experience the full life process."

 

He said that in an interview with reporters to contact him before, there was also a reporter to call him, but on the phone, he put the other party chatter meal. A strong sense of self-defense of the large corporations, so that he felt the other was for the love of many parents.

 

In Tang's eyes, Lele despite suffering from an incurable disease, but as a parent, he hoped that his son be able to fully experience life. His side while wiping away his tears, said: "Since there is this fate with him (Lele), would be worthy of him!" So, from small to large, Lele long as you want, Mr. Tang couple always give everything.

 

The couple is not low wages all used in the Lele body, healing, to buy clothes and toys, etc., even if the unit colleagues, less people know, normally dressed in front of them, "Don always", has also squeezed in his father's old dorm room. Units difficult subsidy every year, but never saw Mr. Tang requested.

 

During the interview, Mr. Tang often said, Lele is pure and children. In the eyes of 7-year-old boy, no evil and bad guys, and he was faced with a start from their parents, to my grandfather, grandmother, aunt, etc., are the smiling faces. This has to go to school after the "trouble", the next bit in the classroom urine, etc. disturb the students, perhaps in his world, which is not necessarily a bad thing.

 

Tang said he also criticized Lele: "Today you misbehave, you have done something wrong," said Lele will know, but education so far. Tang do not want their children to a short life history, filled with too much advice and censure, he still want their children to maintain his original white one state, flies happier.

 

"You see, a small child called 'Lele', meaning that way." Nickname referred to the origins of his son in more than seven hours of conversation,louboutin discount, Mr. Tang rare to smile. (To protect the privacy of the parties, especially the text faded real name and school)

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■ look forward to your voice

 

A child and 28 children of "Tomorrow" How do we choose

 

More than seven hours of interview time, Lele hiding in the back room to play, but almost every 20 minutes, will be able to see the little boy out from the back room, humming to urinate. Adult world worried, sadness, and he completely unrelated. "They say we selfish, that our children have no education and career pressures, everyone knows ......" Tang painful pause, "knowing that our children, from the born would face pressure to live!" Tang expressed , mucopolysaccharides patients rarely live more than 15 years, the couple worked in uncertainty about the second plan, looked up to find only heartbreak, just this only 7-year-old boy, actually has gone through in the second half of his life time.

 

Faced with a white child in general, can not go to school like their peers normal, for him, is a cruel fact repeat itself, not to mention he was destined to die in a few years, patients suffering from rare diseases; but others while, in the same class of 28 children future can be expected, parents worry is not without reason. These parents are only determined to put aside the instinct of sympathy for the child for a quiet reading environment. Maybe you can blame the parents utilitarian, but this happened on any one person, it is estimated half past one would not think of a better way. As one parent said: "Yes, I sympathize with you,ceinture france, but I do not want their children to have such students." To a child, both parents looks confidently.

 

This dilemma makes heart tangled. Where is the best classroom Lele How to treat sick children Lele rare encounter School, both parents in the performance of this incident, how to evaluate If you are one of them, how will you to solve similar conflicts

 

Welcome readers to call our hotline 025-96096 post your suggestions, views.

 

I always feel that people of wisdom, can always find a way to solve it. Gu Yue Fei

 

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