这是志愿者们给卫生部的信
写给卫生部领导的一封信
恳求信 (中文版)
尊敬的卫生部领导，
您们好！ 我们是两岸三地脊髓损伤患者及其亲友，在极度绝望和万般无奈的情况下，联名写信向你们倾诉我们的悲惨遭遇和痛苦生活，恳求你们在百忙之中倾听我们的心声，给予我们关怀和帮助
根据中国第五次残疾人普查结果显示，目前，由于各种意外和疾病造成的脊髓损伤残疾人，在中国大陆已经超过100万，香港250人， 台湾6万， 超过世界上其他任何一个国家，虽然社会在不断发展， 科学技术在不断进步， 但是据估计，脊髓损伤患者每年仍以6万人的惊人速度在不断增长。
对于我们中的大部分人来说，在成为脊髓损伤病人那一刻，无疑对我们就是进行了无期徒刑甚至死亡宣判。由于脊髓损伤病人轻则双下肢不能动，重则四肢不能动，大、小便失禁，可是就在这种生活已经及其不方便的情况下，并发症还要无时无刻的伴随我们，因为不能站立只能坐着和躺着，可是坐多了躺多了就会出现褥疮，使肌肤大面积出现严重的腐烂，很有可能引发败血症；由于无法正常排尿， 很容易出现尿毒症，尿道感染对于我们来说就已经成为生命中的一部分了。这些对常人看起来很严重的疾病，在我们眼里却是家常便饭。就拿任何正常人都不曾考虑过的大,小便问题，也成了我们最大的梦想和奢望。“我们多希望有一天能再象正常人那样解决大, 小便呀！！！！！！” 很多人在成为脊髓损伤病人那一天起，就再也没出过门，整天过着与世隔绝的日子，这种生活除了等死还有什么意义呢？
脊髓损伤不但给患者本人的生活带来了无限的痛苦，就连这些不幸者的亲友们，也无法摆脱这悲惨的命运。为了长期照顾行动不便的患者，他们不得不改变原有的生活方式，从照顾大、小便这些细微小事，到全身按摩、康复锻炼这些类似半个医生的“大事”，周而复始，日日如此。照顾一个全身瘫痪的患者，每天24小时几乎没有时间休息。对于身体上的劳累，他们还能够坚持，可是用于临床治疗、后期康复、防止并发症的巨额费用，把许多家庭推向了经济的深渊，直至无尽的悲痛之中。这种悲痛对任何一个家庭来说，都不啻一场遥遥无期噩梦
而最令人痛彻心骨的是，当这些亲属们看着他们的亲人日复一日地与轮椅为伴，却不知道这样的日子何时是个尽头，或许永远也不会有尽头，百年之后他们怎能放心地离开这人世呢？又怎能含笑九泉呢？这是许多脊髓损伤患者三口之家所面临的最大痛苦。
我们得知，美国新泽西州罗格斯大学华裔教授杨咏威和中国科学院院士苏国辉教授带领两岸三地几十位脊髓损伤研究人员，在香港、大陆开展了中国脊髓损伤网络临床实验（CHINASCINET） 。第一期实验在香港已经接近尾声， 第二期、第三期试验预计2007年年底和2008年下半年分别实施。这个消息对于我们这些脊髓损伤病人及其亲属来说，是多么让人振奋和高兴呀！！！我们终于盼来了希望，和一丝曙光。
我们没有奢望通过一次临床实验就能彻底恢复成正常人，重新回归社会， 为自己的家庭和社会创造一定的价值，但是我们希望通过脊髓损伤研究的不断发展，至少先能让四肢瘫痪的患者的双手，能够重新运用，起码做到为自己的家庭减少一些负担，让更多的患者不再受大、小便的困扰，为再次回归社会创造最基础的条件；我们没有奢望通过这一次临床实验就能彻底改变我们痛苦、悲惨的命运，但是凭借杨教授30多年来对脊髓损伤研究的执着精神，以及他已经取得的成果，我们完全相信，他能够带领他的团队，为我们中国上百万的脊髓损伤患者，为全世界上千万的脊髓损伤患者，在艰难的治疗道路上点燃最亮的一盏希望之灯
但是，当我们得知此项临床试验还缺乏ZHENGFU相关部门的批准并缺少试验经费时，我们又陷入了万般焦急之中。作为普通百姓，我们没有能力来帮助杨教授他们尽早地开始试验，所以，我们只好通过联名写信的方式，请求您们的帮助。因为我们相信，我们的ZHENGFU是替老百姓着想的ZHENGFU，是替人民办事实的ZHENGFU，是我们这个弱势群体能够得以依赖的ZHENGFU。
我们代表上百万的脊髓损伤患者以及上百万个家庭，恳求你们能尽早批准中国脊髓损伤网络临床实验计划。当我们重新站立起来的那一刻，当我们的亲友重获幸福的那一刻，我们一定会面朝北京，向你们深深的鞠一躬，一定会用照片把我们最快乐的笑容寄给你们。
此致
敬礼！
一群不顾一切追寻希望的患者及家属
附件是我们患者自己以及亲属的故事
Pleading letter (English version)
Dear Leaders from Ministry of Health of China,
We, desperate and helpless spinal code injured(SCI) patients from mainland China, Hongkong, and Taiwan, along with our families and friends, are writing this message to you to show you our painful and tragic life and to beg for helps from you.
Nowadays, due to all sorts of accident and diseases , there are more than 1,000,000 SCI patients in mainland China and 250 in Hongkong and 30,000 in Taiwan . This amount is the highest in the world and it keeps rising with a dramatic speed over 60,000 more each year.
For most of us, the moment when we became a SCI person, is also no doubt the moment of life imprisonment, even death sentence. SCI patients cannot control not only low extremities or whole extremities, but also bladder and bowl . What more serious is, many complications will be following us all the time. Because we can not stand , we have to sit and lay down all the time, which result in skin ulcer easily . Because of the problem of urination, which result in uremia easily , urethral infection is almost part of our lives. These serious diseases are rare to normal people, but for us, they are like three meals a day. Even the problem of piss is driving us crazy. Although it is a basic need of human being , for us it is extravagant hopes. From the day becoming SCI patients, most of us have never been out from homes and have been secluding from the world . What is then the meaning of this life? This life has no meaning for us instead of waiting for death.
SCI brought SCI patients ourselves infinite sadness from the day of disaster, and out family have to change their used life totally along with us. They take care of us from trivial things , such as bladder and bowl, till massage and assist of rehabilitation which do by doctors in hospital . Caring quadriplegic patients they are 24 hour completely occupied with little rest. They suffer not only physically, but also mentally and financially. In order to keep us alive and keep us away from complications, a huge amount of money is needed. This leads a lot of families to the deepest desperation and the most terrible night mare.
Expect all these, what breaks our hearts the most is: when our families are looking us sitting in the wheel chair day after day, and nobody has an idea when it will be an end. How could they one day leave their beloved children alone in this world? How could they get peace in the heaven? This is the most pain for most of the 3-persons family in China.
Now we know about Dr Wise Young ,W. M. Keck Center for Collaborative Neuroscience Rutgers, the State University, Piscataway, New Jersey, along with Dr Su Guohui , Chinese Acdamy of Science are leading many SCI researchers from China Mainland, Taiwan, and Hongkong to begin a network clinical experiment of spinal code injury, so called CHINASCINET. The first period is coming to the end in Hongkong, the second and the third period is planning to start from end of this year and beginning of next mid-year respectively. This news is so great for us and we finally can see some light of hope. Although we are not hoping this experiment could cure our pain in one night. But based on the experiences of over 30 years continuously researches of Dr Yang and his already made achievement, we 100% believe that he could lead his researchers to light the brightest way of cure for over 1 million spine injured patient in China and for over 10 million in the whole world.
But when we got to know that this experiment is still lack of financial support and is still waiting for approval from the government, we are falling into deep anxiety again. As normal families, we are unable to help them start the ChinaSciNet but only by writing to you letters because we fully trust that our government is one who takes care of their people, who does help their people from all perspectives and is a government whom we, weak groups do rely on..
We represent over a million SCI patients and family to beg you to permit the ChinaSciNet. At the moment we will stand up, at the moment our beloved relatives regain hapiness, we will surely give the best honor to you and give our best respect to you. Pictures of our smiling will also be sent to you with love from the bottom of our hearts.
With best regards
Desperat SCI patients and relatives
Attachments are some stories of ourselves and our beloved families
[ 本帖最后由 西西 于 2007-10-6 19:22 编辑 ]
