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Started 10 years ago by plqgi839127

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excitedly looked at the home vegetable garden in front of the house, I did not feel great people heavy. Our reporter Julia photo November 1 at noon, Li Qichuan a six back Qianjiang District in Chongqing City home country, which is Liqi Chuan and his wife went to Beijing to work for seven years for the first time to go home. And they go home there Li Qichuan Nearly seventy parents and two "Porcelain Doll" son. Rui son was born in 2006 in Beijing, this is his first time back home, and parents and son five years is to go to Beijing for the first time to go home. In 2007, when two elderly people carrying the grandson go to Beijing, the village people sigh: "This is probably going to die wanderers on the outside of." 10-year-old is Pi Village, Chaoyang District, experimental schools concentric Jinzhan fourth grader, but the height and children 3 years old or so similar, and can only be carrying a walk. Rui slightly higher, some strong, open hand can waddled a few steps away. Two children are suffering from a name of osteogenesis imperfecta rare disease, also known as bone disease. I do not know who gave this child took a "porcelain doll" Alias, describe them as made of porcelain doll cute but brittle. Two children, now the situation has a lot better than in previous years, thanks to them since last year in Tianjin, moving two operations. 56 network together "Everyone Public" started "Warm 2012" public action, the small brothers story was made into public service micro movie "Stand and Ruirui." They understand the desire to return home to see after 56 network to help them achieve this desire. Longing for a better life to an abrupt end when the child year and a half Home on the hillside, now just dilapidated old wooden house, the door was open, messy floor, placed only two bedstead. Even the nominally faster gone home - the village in the land, Li Qichuan already submitted an application. If all goes well, he could get 3,000 yuan in compensation. 33-year-old Li Qichuan standing in middle of the room, downcast eyes, a long time without saying a word. Lijiang Lin sad without a father. He said that as a child, carrying his grandfather had a purple fruit picking in the mountains, especially delicious, the way he looked in the street told us is there? To the front of the house, he insisted Aunt put him down, good to touch someone else's old pumpkin seed. Next to the vegetable garden is a room on the roof slope below, masonry brick build some water. Lijiang Lin holding a stick in the water mix: "Hey,hogan outlet, I kept a small fish in there, and how gone is not being eaten??" Heavy big people's patents. Grandpa from the old house a mess on the ground and picked up a photograph, it is a photograph six months when, so that photos become mottled sun and rain,http://www.jmlt.net/home.php?mod=space&uid=54340, but still be able to see it was a delicate features, glowing children. This photo was taken when the whole family is the happiest time. At that time the family had a great day in the village is on fire, "do not say the best, at least in the first three brigade is incorrect." 64-year-old grandmother said. Grandma agile work, in addition to farming, vegetables outside, still will be pigs, raising eight pigs each year and one cow. Only son migrant workers after graduating from middle school, back to Guizhou girl Deng Lianxiu, they married they stay at home to work. Until June 2000, when the Lijiang Lin was born, they had more than ten million she saved, looking forward cover new home. Yu Li Qichuan do their own work of more than 5,000 bricks, tiles were broken into after him with stones plus powder made of cement, and stones after chores done every day to the mountain to the back of a backpack and a basket carried back, every day back a 20 times, each time back seven jin, back for a whole year. Born undoubtedly make the family even more perfect. And this home to all the wonderful vision of the future in abrupt end when a half years old. The walk Lijiang Lin simply stand up, and a fall on the fracture. The couple began carrying out Lijiang Lin kept chemists. But no one can clearly tell them that this is what the disease. Styled, they find a "marching" to ago, "Sin" pretentiously squeeze the squeeze put arm, yet he pinched fracture; they listened to persuade people in the village, please see feng shui the graves, re-established the monument, but Lijiang Lin's situation has not improved. In 2005, he spent all their savings, the couple went to Beijing only son entrusted to grandparents after work, to make money, but also to give his son the opportunity to seek treatment. To Beijing for the second year, she gave birth to a son Rui Deng Lianxiu. In Qianjiang hospital, listening to a doctor say, and then to not be a problem if the child is a girl, if it is a boy, then to a half when it should be careful not to walk. But the desire for a healthy child is still prevailed. Rui born less than 20 days, the couple has to hold his children went to Beijing Institute and Beijing Children's Hospital. They lined up in Beijing Children's Hospital three days the team was linked to a number of experts, the experts face to the door was taught a lesson: "You two adults and a child is not defective it look so small to hold what disease?? This is pretty much the child more healthy way, to have what is wrong with you? " Despite being training of the meal, the couple indescribably happy. said: "Most people can not understand that we are eager to have a healthy child Amway kind of mood we say good things, give the child to eat it up the body even though hundreds of dollars a bottle, we also let the children eat one. year old. "Li Qichuan not remember his children to eat something in the end what was the name, just remember that the pill form, when the child is too small can not eat, to the water feeding of the children to eat. However, Rui a half years old when the family's dream shattered once again, the situation is exactly the same Rui and his brother. 130,000 yuan of surgery can only be reimbursed 6,000 yuan In any case, we will have to continue living. In order to take care of the children, Li Rui 1 year old, grandparents with Lijiang Lin to Beijing. Lijiang Lin at school, the teacher from online inquiry to porcelain dolls rare disease care center, told Li Qichuan. Also from the porcelain doll rare disease care center, Li Qichuan first two children can know the surgery, but because of low bone density condition has not yet reached the surgery, only the first medication. August 21, 2011, Chinese porcelain doll Second Conference held in Beijing. Tianjin Renxiu Zhi doctor came, watched two children, said after the operation could be performed. "At that time our family did not describe the excitement law." said, "but then a large sum of surgery come from?" Mid-year,Piumini moncler outlet, two children in Tianjin, moving the first surgery, the 2012 New Year's Day moved second surgery, one leg at a time into the nail inside. Surgery spent a total of 130,http://www.ggyqzhuan.com/home.php?mod=space&uid=10632,000 yuan. After Lee brothers stories reported by the media, they received 30,000 yuan donations. Porcelain doll rare disease care center gave them 20,000 yuan of medical assistance. Although the family have participated in the new rural cooperative, but only reimbursed 6,000 yuan. Each had more than four months, two children have to go to Tianjin transfusion three days, each spent more than 4,000 yuan. By the end of August this year, two children again go to Tianjin infusion, to give his son to do the discharge procedures, when asked whether or not the cost of hospital and medical records list? Li Qichuan refused. After the first infusion,roshe run femme pas cher, the bill returned to Chongqing, was told that because imported drugs are used, a penny can not be reported. The main family income by couple doing porter at the construction site, handyman, because the old man, the child's illness, they can only do odd jobs. "Last year also earn more than 50,000 yuan, no big surprises still able to cope with daily expenses, can save one or two million. This year the job is relatively small, it is difficult." he said. A 6 person a month for food control in less than 1000 yuan. Most people go shopping 10 minutes on the back, while the grandfather every time I go every one hour, wandered down the street from the street,http://www.soharp.com/bbs/home.php?mod=space&uid=3935248, you want to buy cheap. On the night table is a vegetarian generally a soup, half a month will add a meat dishes. Family do not eat breakfast, they calculations: If the family six people, everyone eats breakfast is 12 yuan per day, is more than 4,000 yuan per year, enough to lose two children was the one back. His family rented two dilapidated houses in the village in the skin. Porcelain doll rare disease care center president Wang Yi Ou Li also remember to visit last year, coinciding with the coldest time of year, you may not be willing to burn coal stove Lee, just to give two children with a little warm water treasure . Distress in the warmth of the day The annual Chinese New Year, when migrant workers have returned home around the time, but keep Lee in Beijing, said on 2 pounds of meat, buy a fish, even if the New Year. But Li Qichuan know, even if the family has nothing, parents still want to go home because the family has their familiar surroundings and familiar people. Chongqing even leave only 5-year-old this back home, suddenly uttered a sigh lying on Aunt shoulder: "Oh, I really want to leave." Reporters teased him: "Beijing is home to good or okay?" 10-year-old child little adults Side, said: "Not everyone says home okay?" In fact, this home only three days time. November 3, the family returned to Beijing. Because every day the two children go to school, had to take care of their grandparents, mom and dad have to seize the time to go to work. In order to facilitate the treatment of children, they must stay in Beijing. November 5, returned to Beijing in the first three days, Deng Lianxiu went porcelain doll Orphan Care Centre office, to pick up the center issued a month to each child a box of free milk. While living in a foreign land, Li Qichuan one still feel a lot of warmth. and Rui school eliminates all their expenses, from the beginning of this semester also eliminates the two children and accompanied them to school lunch grandmother. His family rented two houses in the village of skin. Others rent a month's rent is 220 yuan, and they rented a large room in a small, landlord received only 260 yuan. On the way back to his hometown of Chongqing, Russian for everyone to recite a poem, saying thank Grandpa taught. Xie grandfather is a retired citizen of Beijing, from the beginning of this semester, every Wednesday and Saturday afternoon will come to two children homework, teach them Russian, English, art, painting. . "Rainy day will come," said: "The one time we eat we thank my grandfather to go live in the suburbs, he lived in Sanyuan Bridge, take the bus to go back home, he was sitting two hours I am afraid. 20:00 a. " Speaking to the children of surgery doctor, Li Qichuan gratitude was palpable: "They are to bribe a doctor, but we doctors give children red envelopes to send any of the children after knee surgery doctors gave two children 3.000. yuan." Porcelain doll rare disease care center is more like them a home in Beijing. Porcelain doll rare disease care center had given two children each 150 yuan monthly funding, designed to improve children's lives. November 4, in their return to Beijing the next day, a Jiao came home and said he had put to the annual cost of two children, one-hit relief account porcelain doll rare disease care center on. These are so confused that they see hope in the. Just worrying, the two children in a year, according to the growth and development of the body, every two or three years one operation, the last time after the surgery, still owes more than 50,000 dollars Aunt,http://www.czysczy.com/bbs/forum.php?mod=viewthread&tid=38772&extra=, next the cost of surgery and come from? Multi-appeal as soon as the legislative rare disease "To promote government policies introduced in the field of rare diseases" - in their mission porcelain doll rare disease care center, which is an important element. In February 2009, a rare disease care center porcelain doll joint five rare disease organizations launched solicitation "appeal as soon as a rare disease legislation" two proposals network signature. Since then, the annual two sessions, porcelain dolls rare disease care center will advise by NPC deputies and CPPCC members. Rare disease diagnosis is difficult, more difficult to treat. Since each disease a relatively small number of patients, the medical profession and society to its less well understood, easily overlooked, most patients are long-term misdiagnosis; rare disease "range and other standard diagnostic and treatment practices" has not yet defined and developed so that the patient screening, treatment difficult; coupled includes three hospitals, including a significant number of hospitals lack the necessary equipment to detect rare diseases, the vast majority of rare disease can not be confirmed. It is reported that there are more than 6000 kinds of rare diseases in the world, including the glass people, hemophilia, pulmonary hypertension, Fabre disease, pulmonary lymphatic leiomyoma, getting cold, and so on. Because fewer sick persons, most countries are reluctant to pharmaceutical companies to develop drugs to treat these diseases, only 1% of rare diseases have effective drug, so the rare disease drug called "orphan drugs." Which country has the advent of orphan drugs, the world must be imported, and the formation of a worldwide exclusive monopoly drug prices ridiculously high, two dozen a year more than ten million dollars or even more. Symptomatic of rare disease drugs are basically rely on imports, expensive. After the import, not added into the "Medicare Drug List", Medicare is not reimbursed, many patients can not afford. In the absence of symptomatic drugs,hogan rebel, patient medical expenses for the treatment of symptoms daily, pocket spending portion is higher, the patient has felt difficult to participate in Medicare, Medicare patients did not enter even more, many patients choose to abandon treatment . Currently, the Medicare drug directory is common for most people, the development of serious illness, and drugs to treat rare diseases are not included. One called "Second Hell" Hebei friends said that he was suffering from a rare disease - pulmonary hypertension, there efficacy of imported drugs "all can benefit," Medicare reimbursement shall not, he should 5.8 months of medication million, perennial eat more than 20 million a year. Pulmonary hypertension is still no cure, only treatment to control the disease. There are a lot of countries have formulated and promulgated laws and regulations related to rare diseases in the world, access to medical assistance and social protection for rare diseases provide a legal basis. In recent years, two of the country and where there have been two of the recommendations and proposals on the issue of rare diseases, the development of these recommendations and proposals relating to the definition of a rare disease as soon as possible, establish a national health care system for rare diseases,http://www.fhshbbs.com/home.php?mod=space&uid=36268, rare diseases carried out medical assistance, the development of "rare Disease Prevention Law. " Some of these recommendations have been or are being relevant departments, local government accepted and adopted in some areas also certain rare diseases or certain kinds of medical care and social security have been useful to try and bear fruit. But rare disease health care system across the country to promote the construction work is still relatively slow. Many medical experts are using a variety of opportunities for a variety of occasions called Shanghai Pulmonary Hospital Jing Zhicheng professor of pulmonary vascular disease treatment center is one of them. Jing Zhicheng said that the public leukemia, uremia and other diseases is very high degree of concern, now the country has put a lot of that sort of diseases, including cancer, are included in the health insurance, but the focus on rare diseases are few. In fact, some diseases into the national health insurance, even if all the free treatment, can not be improved if more, nor can prolong the patient's life. Such as lung cancer, even though life is very limited free treatment, but as long as the treatment of patients with pulmonary hypertension will be able to live, the more the more formal treatment can prolong the patient's life, and a high quality of life, but if you did not receive timely treatment, they usually only two or three years of life. Jing Zhicheng said, because China has not formulated relevant laws for the rare disease community to protect their basic rights, but also, unlike patients with pulmonary hypertension in patients with osteogenesis imperfecta as having a physical disability or obvious external characteristics, can not follow people with disabilities Enjoy social care and treatment care policy. Despite the slow progress, but Jing Zhicheng undaunted, he said given the chance, they will continue to appeal to the interests of the patient, because only an institutional guarantee to bring more patients to be born. Porcelain doll rare disease patient care center set up exchange platform Our love is not fragile Sponsor porcelain doll rare disease care center king and yellow as party himself is a rare disease. May 2007, suffering from brittle bone disease, Wang Yi Ou mild and patients with rare yellow as party quit his job, co-founded the porcelain dolls Care Association (now known as the porcelain doll rare disease care center), and officially in 2008 registered in Beijing. Care center now has a full-time staff of 12, more than 500 volunteers, and more than 1,000 nationwide "porcelain doll" family contact, provide cover health, education, employment and other full range of services for them. 2009 8 years, porcelain dolls rare diseases Care Fund was established a special fund for carrying out rescue osteogenesis imperfecta patients with rare disorders and their families, and other related medical living assistance, social services and the establishment, is China's first specialized service in the rare special fund disease groups. Wang Yi Ou told reporters, after 2010, in addition to patients with cartilage, a growing number of other types of rare diseases will also meet with porcelain dolls Care Center, for support. Currently, the center's medical aid is mainly for porcelain dolls, other funding, such as one to one live, free milk and other funding is for all rare diseases. "Rare disease entirely dependent on government assistance there is a process, so we set up the purpose of the organization is to establish a platform for mutual exchange of patients, and the formation of the investigation report by the group of investigation, appeal to the community concerned about this group, understand their needs Not there is a saying God helps those who help themselves it? "Wang Yi Ou said. For many rare diseases, because their disease is very rare, and even many doctors are not clear, leading them do not know how to treat and care. Wang Yi Ou unforgettable Delei called osteogenesis imperfecta patients. De Lei, who lives in Beijing Peony Garden, childhood his mother took him to see a doctor, the doctor said: "Since he always fractures, let him lay in bed do not move." This lie is 19 years. When Wang Yi Ou volunteers and doctors took care center to his home due to prolonged bed rest,http://121.41.32.154/read.php?tid=98113&ds=1, his bones were absorbed by muscle, lung function has also been a recession. Volunteers taught computer design, with the ability to earn money to feed themselves which he also look forward to the future. But less than a year,hogan outlet, Delei passed away. Wang Yi Ou said that this is a typical case of thwarted due to ignorance. In fact, not particularly severe osteogenesis imperfecta patients who, if treated promptly, it can work and live like a normal person's. Lee had spent a very difficult time, in addition to economic embarrassment, but also because you do not see any hope, the couple quarreled, and even mentioned divorce. Now, because they understand how it happens, we know that children have hope of treatment, although there are still many difficulties, but a lot of people feel at ease. "Interaction between patients is very important." Wang Yi Ou said. Therefore, care center regularly launch porcelain doll journals, two patients convene a conference in Beijing. So far, the care center has held two Chinese porcelain doll patient General Assembly, hundreds of the patient's family gathered together. "They think 'finally met patients like me a' poor physical condition of some patients see 'porcelain doll' when those who can walk, think 'If I were trying to treat, they do not give up, I can be like he did. 'Some of those good condition, you can walk yourself or in wheelchairs, those who need to see Mom and Dad holding, physical deformities very severe patients, he will think,' Look, he is so hard, physical condition so bad, but also adhere to the study, also less optimistic,http://www.naishuishe.com/home.php?mod=space&uid=53971, why should I depressed? '"Wang Yi Ou think, between patients and the patients, the support of parents and parents is especially important. "Fortunately, our love is not fragile." This is the slogan porcelain doll rare disease care center. 12 employees - of which three are rare diseases, more than 500 volunteers, many more silently watching the community of this group, is using his love for the rare disease community and the way forward to bring warm heart . & Nbsp,http://bbs.anyidehen.com/home.php?mod=space&uid=30008; (Original title: "Porcelain Doll" Go home) (Edit: SN056) 

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