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November 1 at noon, Li Qichuan a six back Qianjiang District in Chongqing City, the country home,air max pas cher, this is Li Qichuan and his wife went to Beijing to work for the first time in seven years to go home. Home with them as well as Li Qichuan Nearly seventy parents and two "Porcelain Doll" son.

Li Rui youngest son was born in Beijing in 2006, this is his first time back home, but parents and son is to go to Beijing for the first time in five years to go home. 2007, when the two old grandson went to Beijing when carrying the village people sigh: "This is probably going to die wanderers on the outside of."

10-year-old is leather Village, Chaoyang District, Jinzhan concentric Experimental School fourth-grade students, but the height and children 3 years old or so similar, and can only be carrying a walk. Li Rui slightly higher, some strong, open hand can waddled a few steps away. Two children are suffering from osteogenesis imperfecta a name of a rare disease, also known as bone disease. I do not know who gave this child to take a "porcelain doll" Alias, describe them like porcelain dolls do as lovely but fragile. Now the situation has two children, a lot better than in previous years, thanks to them since last year in Tianjin, moving two operations.

In the 56 network together, "Everyone welfare" started "Warm 2012" public action, the little brothers of the story was made into a public service micro film "Stand and Ruirui." Understand their desire to return home to look after the 56 network to help them achieve this desire.

Longing for a better life to an abrupt end when the child a half years old

Home on the hillside,http://newhouse.0472fcw.com/apps.php?q=diary&a=detail&did=1176153&uid=39086, now just dilapidated old wooden house,http://www.jiese.cn/home.php?mod=space&uid=116268&do=blog&quickforward=1&id=5105406, the door was open, Montreal messy, placed only two bedsteads. Even the name of the home is also fast no - the village in the land, Li Qichuan already submitted an application. If everything goes well, he can get more than 3000 yuan of compensation.

33-year-old Li Qichuan standing in middle of the room, downcast eyes, and for a long time without saying a word.

Lijiang Lin did his father's sad. He said that as a child, carrying his grandfather had a purple fruit picking in the mountains, especially delicious, the way he told everyone in the street looking at is there? To the front of the house, he insisted Aunt put him down, and go to touch others kinds of old pumpkin. Vegetable is a room next to the roof slope below, build a brick build some water. Lijiang Lin took a stick in the water mix: "Hey, I kept a small fish in here, and how missing is not being eaten??"

Heavy big people's patents. Grandfather from the old house a mess on the ground and picked up a photograph, it was six months old when the photo , sun and rain to make the photo becomes mottled, but still be able to see it was a delicate features, plump child.

This photo was taken when the family is the happiest time. At that time a man had a great day in the village was on fire, "do not say the best, at least it is in the first three brigade thing." 64-year-old grandmother said.

Grandma agile work,http://bbs.beijingshouyi.com/forum.php?mod=viewthread&tid=79423, in addition to farming, growing vegetables outside, still be the pig, raising eight pigs each year and a cow. Only son after graduating from middle school to go out to work, back to the Guizhou girl Deng Lianxiu, they married they stay at home to work. Until June 2000, when the Lijiang Lin was born, she saved more than ten million they have, look forward cover new home. Yu Li Qichuan work done over 5,000 of their own bricks, tiles were broken into after he used a stone made of cement powder plus, but the stone is done housework a day after a basket carried a basket carried to the mountain back to back, every day to wade back a 20 per back seven jin, back for a whole year.

Born undoubtedly make this family even more perfect. And this family a better vision for the future of all the an abrupt end when a half years old.

The walk Lijiang Lin simply stand up, but a fall on the fracture. The couple began carrying Lijiang Lin kept out chemists. But no one can clearly tell them what disease. Styled, they find a "Sin" to read,air max pas cher homme, "Sin" pretentiously pinch the pinch of the arms,http://237.newfine.net/home.php?mod=spacecp&ac=blog&blogid=, yet he gave pinch 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.

2005,piumini peuterey outlet, spent all their savings, the couple went to Beijing only son entrusted to grandparents after work, in order to make money, but also to give his son the opportunity to seek treatment.

The second year in Beijing, Deng Lianxiu gave birth to son Li Rui. When the hospital in Qianjiang, listening to a doctor said, if the child is a girl and then to a big problem, if it is a boy, then to a half when we should be careful not walk. But the desire for a healthy child is still prevailed.

Li Rui born less than 20 days, the couple is holding his child has gone to Beijing Institute and the Beijing Children's Hospital. They lined up at the 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 child more beautiful and more healthy way, what is wrong can you? "

Despite the reprimand, the couple indescribably happy. said: "Most people can not understand that we are eager to have a healthy child Amway kind of mood everyone says good things for children to eat up the body even though it is a few hundred dollars a bottle, we also let the children eat one. year old. "Li Qichuan not remember his children to eat in the end what was the name, just remember that pill-shaped, when the child is too small can not eat, to the water feeding of children to eat.

However, Li Rui half years old when the family's dream shattered again, the situation is exactly the same Li Rui and his brother.

The surgery costs 130,000 yuan 6000 yuan can only be reimbursed

In any case, life somehow continues.

In order to care for their children, Li Rui 1 year old,moncler uomo, grandparents took Lijiang Lin to Beijing. Lijiang Lin at school, the teacher from online inquiry to the porcelain doll rare disease care center, told Li Qichuan. Also from the porcelain doll rare disease care center, Li Qichuan the first time that two children can be surgery, but because of low bone density condition has not yet reached the surgery,moncler piumini, 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, two children in Tianjin moving the first surgery, the 2012 New Year's Day move a second surgery, scored inside each leg in a nail. Surgery spent a total of 130,000 yuan.

After the Lee brothers stories reported by the media, they received 30,000 yuan donations. Porcelain doll rare disease care center gave them 20,000 yuan in medical assistance. Although the whole family attended the NCMS, but only reimbursed more than 6000 yuan.

Each had more than four months, two children have to go to Tianjin infusion three days,tn requin pas cher, each spent more than 4,000 yuan. By the end of August this year, the two children again to Tianjin infusion, discharge procedures to give his son to do, when asked whether or not the cost of hospital and medical history list? Li Qichuan refused. After the first infusion, the bill and return to Chongqing, was told because of drug use are imported, not a penny newspaper.

The main income of the family rely on couple porters at the construction site, handyman, because the elderly, 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 a couple of million. This year is relatively small job, very difficult." said.

A six month's meals were controlled at less than 1,000 yuan. Most people go shopping 10 minutes on the back, and my grandfather every time I go to be one hour, wandered down the street from the street, want to buy cheap. On the night table generally is a vegetarian one soup, two weeks will add a meat dishes. Family do not eat breakfast, they calculations: If the family six people, everyone eats breakfast is 12 yuan a day, is more than 4,000 yuan per year, enough to lose two children back was a.

His family rented in two dilapidated houses in the village skin. Porcelain doll rare disease care center president Yi Wang Li Ou remember to visit last year, coincided with the coldest time of the year, can Lee not willing to burn coal stove, 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 the two pounds of meat, buy a fish, even 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. Even leaving only a 5-year-old Chongqing 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-olds small adults Side, said: "Not everyone says home okay?"

In fact, this home is only three days time. November 3, the family returned to Beijing. Because one day after the two children should go to school, had to take care of their grandparents,spaccio woolrich, mom and dad had to make time to go to work. In order to facilitate the treatment of the child, they must stay in Beijing.

November 5, returned to Beijing in the first three days, Deng Lianxiu went porcelain doll orphan care center office to pick up the center's monthly payment for each child a box of free milk.

While living in a foreign land, Li Qichuan a still feel a lot of warmth. and Li Rui eliminating school fees for all of them, from the beginning of this semester, but also eliminates the two children and accompanied them to school lunch Grandma. His family rented two houses in the village in the skin. Others rent a month's rent is 220 yuan,louboutin soldes, 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 was a retired citizen of Beijing, from the beginning of the semester, every Wednesday and Saturday afternoon will come to tutoring two children, teach them Russian, English, art,http://www.365kl.net/home.php?mod=spacecp&ac=blog&blogid=, painting. . "Rainy day will come," said: "The one time we eat we thank Grandpa to go live in the suburbs, he lived in Sanyuan Bridge, take the bus back home, he was sitting two hours I'm afraid. 20:00 a. "

Speaking to the children operated on doctor, Li Qichuan thankful: "They are to bribe the doctor, we are the doctors give children red envelopes to send to children in any knee surgery after doctors gave two children 3000. 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 subsidy, designed to improve children's lives. November 4, in their return to Beijing the next day, a Jiao came home and said he had two children to the annual cost of one hit relief accounts porcelain doll rare disease care center on.

These are so confused that they see hope in the middle. Just worrying is that two children in a year, according to the growth and development of the body, we must move once every 2023 operation, the last time after the surgery, but also owe my aunt more than 50,000 yuan, the next time The cost of surgery has come from?

Many calls as soon as a rare disease legislation

"To promote government policies introduced in the field of rare diseases" - objectives porcelain doll in rare disease care center,air max pas cher homme, which is an important element. February 2009, porcelain doll rare disease care center combined five rare disease organizations launched solicitation "calls for a rare disease as soon as possible legislation" two proposals network signature. Since then, the annual two sessions, porcelain dolls orphan care center will make recommendations by NPC deputies and CPPCC members.

Rare disease diagnosis is difficult, more difficult to treat. Because each disease relatively small number of patients, the medical profession and society to its less well understood, easily overlooked, the vast majority of patients were long-term misdiagnosis; rare disease "range and clinics specification standards" has not yet defined and developed so that the patient screening, treatment difficulties; combined, including three hospitals, including a considerable number of hospitals lack the necessary equipment to detect rare diseases, the vast majority of rare diseases can not be confirmed.

It is reported that there are more than 6000 kinds of rare diseases in the world, including glass people, hemophilia, pulmonary hypertension, Fabre disease, pulmonary lymphatic leiomyoma, getting cold, and so on. Because fewer sick persons, the majority of the country's pharmaceutical companies are reluctant 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 whole world should be imported, and the formation of a worldwide exclusive monopoly drug prices ridiculously high, two more than ten million a year more than ten million or even more.

Symptomatic of rare diseases basic medicines are imported and expensive. After the import is not added into the "Medicare Drug List", do not give Medicare reimbursement, many patients can not afford. In the absence of symptomatic drugs, the patient palliative treatment for routine medical expenses, the expense of expenditure is higher, patients have participated in Medicare feel difficult, even more than the patients who did not carry health insurance, many patients choose to abandon treatment .

Currently, the Medicare drug directory is common for most people, developed a 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, have the effect of imported drugs "all can benefit" shall not reimburse Medicare, his three-month drugs should 5.8 million, perennial eat more than 20 million a year. Pulmonary hypertension is still no cure, only medication to control the disease.

There are a lot of countries have formulated and promulgated laws and regulations on 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 sessions 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, to establish national health insurance system rare disease, a rare disease medical assistance to carry out development of "rare Disease Prevention and Control Law. " Some of the recommendations have been or are being relevant departments, local governments accepted and adopted in some areas also for certain rare diseases or certain kinds of medical care and social security were 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 appealed Shanghai Pulmonary Hospital Center for treatment of pulmonary vascular disease, Professor Jing Zhicheng is one of them.

Jing Zhicheng said the public on leukemia, uremia and other diseases is very high degree of concern, now the country has put a lot of sort of diseases, including cancer, are included in the health insurance, but focus on rare diseases are few. In fact,moncler piumini, some diseases into the national health insurance, even if all the free treatment, can not be improved if more, it can not prolong the patient's life. Such as lung cancer, even if free treatment life expectancy is limited, but as long as the treatment of patients with pulmonary hypertension can live, the more the more formal treatment can prolong the patient's life, and a high quality of life, but if you do not receive timely treatment, they usually only two or three years of life.

Jing Zhicheng said, because our country has not developed for rare diseases relevant laws to protect their basic rights groups, but also, unlike patients with pulmonary hypertension in patients with osteogenesis imperfecta as having a physical disability or obvious external characteristics,http://www.gruot.net:87/forum.php?mod=viewthread&tid=10855243, and can not follow people with disabilities Enjoy social care and treatment policies care.

Despite the slow progress, but Jing Zhicheng undaunted, he said, given the chance, they will continue to call on patients' rights, because only system in order to protect the students hope to bring more patients.

Porcelain doll rare disease patient care center built platform

Our love is not fragile

Sponsor porcelain doll rare disease care center and yellow as the king 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 a porcelain dolls Care Association (now known as porcelain dolls orphan care center), and officially in 2008 registered in Beijing. Care center now has 12 full-time staff, 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 doll 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 of, is China's first specialized service in the rare special fund disease groups.

Yi Wang Ou told reporters, after 2010, in addition to patients with brittle bones, more and more patients with other types of rare porcelain doll care center will be contacted for support. Currently, the center's medical assistance is mainly directed against the porcelain doll, the other one's life, such as funding, 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 this organization is to establish a platform for mutual exchange of patients, and the formation of the investigation report by the investigation of this group, called on the community concerned about the groups, understand their needs No, there is a saying that God helps those who help themselves it? "Yi Wang Ou said.

For many rare diseases, because their disease is very rare, and even many doctors are not clear, they do not know how to lead treatment and care. Yi Wang Ou unforgettable called Delei osteogenesis imperfecta patients. Delei who lives in Beijing Peony Garden, when young mother took him to the doctor, the doctor said: "Since he always fractures, let him lay in bed do not move." This lie is 19 years.

When volunteers Yi Wang Ou and care centers with doctors to his home,piumini moncler, due to prolonged bed rest, his bones are absorbed by the muscles, lung function has also been a recession. Volunteers taught computer design, the ability to earn money to feed themselves with this he also looking forward to the future. But less than a year, Delei passed away.

Yi Wang Ou said, this is a typical case of thwarted due to ignorance. In fact, not particularly severe in patients with osteogenesis imperfecta who, if not treated promptly, can be like a normal work and life.

Lee had to spend some very difficult years, in addition to economic embarrassment, but also because you do not see any hope, the couple constantly bickering, and even mentioned divorce. Now, because they understand how it happens, know that the child has a hope of treatment, although there are still many difficulties, but a lot of people feel at ease.

"Interaction between patients is very important." Yi Wang Ou said. Therefore, care center regularly launch porcelain doll journals, two patients convene a conference in Beijing. So far, the care center has been held twice a Chinese porcelain doll patient Assembly, hundreds of the patient's family gathered together. "They think 'I finally met with the same patients' poor physical condition of some patients to see' porcelain doll 'when those who can walk and think' I wish I strive to treatment, they do not give up, I can be like he did 'a good number of those situation, you can walk yourself or a wheelchair, to see those who need mom and dad holding, physical deformities very severe patients, he will think,' Look, he is so hard, physical condition so bad, but also insist on learning,http://bbs.uoosong.com/forum.php?mod=viewthread&tid=561845, but also less optimistic, why should I depressed? '"Yi Wang Ou believes patients and between patients,woolrich sito ufficiale, parents and parents support is particularly 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,http://xueshengdu.hkw6.dnsw1.net/thread-230953-1-1.html, more than 500 volunteers, and more quietly watching the community of this group, is using his love for rare disease groups and the way forward to bring warm heart .



(Original title: "Porcelain Doll" Go home)