救助Anderson
分类: 美国  发布时间: 2013-09-24 00:17 

救助Anderson

七年前,如果不是倔强坚韧的竹决定独自承受,我们早就应该知晓他们母子的“故事”了:


2006年8月,离预产期还有六周,体重只有2公斤多的安德森 (中文小名小蛋儿)就提前和妈妈见面了。万万不曾料想, 饱受妊娠综合症折磨又经历紧急剖腹产的妈妈,迎接的却是更加残酷沉重的现实:小蛋儿患有罕见的先天疾病 “Goldenhar综合症” (Goldenhar syndrome) 和“Klippel-feil 综合症” ( Klippel-feil syndrome) 。他不幸拥有了此病患者的所有典型症状:先天心脏病,肾脏和脊椎疾病,一侧脸部发育畸形,左耳缺失。犹如晴天霹雳,竹仿佛霎那被抛入了万丈深渊,孕期关于孩子的美好憧憬把现实彰显的更为残忍。出生后不到两个小时,小蛋儿就被紧急转到专属儿童医院的三级(最高级)重症加护病房。他面对的是比一般早产儿更为严峻的生存挑战。雪上加霜的是,持续感到呼吸困难和胸口疼痛的竹,不仅没有如期恢复出院,在产后第四天,被确诊得了几乎致命的产后并发症:急性肺栓塞!竹立即被转到心肺重症加护病房。躺在不同重症加护病房的母子同时徘徊在生死的边缘。在病床上,竹每天挣扎着与儿子的数个专科医生通话。在那些无法接受现实的日子里,她经历着身体上的巨大痛苦和对小蛋儿的深切挂念,整日整夜的难以入眠,几乎把这一辈子的泪水都流干了。生性乐观的竹第一次丧失了生的欲望:离开人世是一种解脱,而简简单单活下来竟变得如此的艰难。。。。。。一个星期后,经过漫长如一个世纪的煎熬,她终于在产后第八天坐着轮椅第一次看到了自己用尽全心孕育的生命,一个浑身插满了管子,仍旧生死未卜却极其可爱的小生命 ! 第一次把儿子抱在胸口,强大的母爱瞬间把竹唤醒。从那一刻起,她下定决心无论未来有多么艰难困苦,她都要为了孩子勇敢地活下去。从那一刻起,小蛋儿也成为了这位母亲生活的全部意义和力量的源泉。
生命的最初一年,竹带着小蛋儿四处求医,访遍专科专家,经历了数次大手术。小蛋儿仅仅五个月的时候就做了第一次开心大手术。由于手术存在不可预知的高风险,每一次面对即将推入手术室的孩子,对竹来说都是真实的生离死别。 看着孩子天真美丽安然不知愁的样子,内心在痛哭的竹都是对孩子轻言细语微笑抚慰。最不忍回首的一幕是:当护士从竹的臂弯接过小蛋儿走向手术室的大门时,小蛋儿趴在护士的肩头用灿烂的微笑回望着妈妈,挥舞着小手拜拜,竹竭尽全力忍住已经夺眶的眼泪对孩子回以微笑,而每一步的远离都是竹撕心裂肺的痛。就在护士推着小蛋儿消失于安全门后的一瞬间,心力交瘁的竹竟然瘫倒在地。随后是令人煎熬的等待,如坐针毡地度过手术的每一秒钟。每次手术结束,小蛋儿还要在重症加护病房再住十来天才能出院。与此同时,竹还要努力保住现在这份辛苦的全职工作,以便有这唯一的经济来源和医疗保险。每一回手术和恢复期,她都要在医院,工作单位和住所之间多次往返,经常每天只有两三个小时的睡眠。每一天的生活都是在死与生,绝望与希望,泪水与喜悦中轮回。之后的七年,为了最大可能地帮助孩子复健和克服机能障碍,母子二人每周都要奔走于各医院,理疗训练也是一项接一项排得满满的。
。。。。。。
听说老天爷关上一扇门,就会打开一扇窗。折翅的小天使有着与生俱来顽强的生命力,小小年纪历经磨难仍不泯乐观温良的天性。今天, 七岁的小蛋儿,在妈妈的悉心养育下,是个很棒的二年级小学生。和很多同龄的孩子一样,他喜欢上学,看书,玩电脑,户外远动;极富幽默感又心地善良的他拥有众多的朋友;他聪慧好学, 虽然先天的身体条件和额外理疗安排让他的生活日程比他的朋友们都辛苦忙碌一些,可是他都快乐面对,有着和他年龄不相符的勇敢和坚韧。七年来,母子相依,击败无数挑战, 才有了小蛋今天的生活状态,可是,这并不是完结,而是面对更多更大的挑战。。。。不久的将来,已知的手术包括:
• 安装心率起搏器来帮他解决日渐严重的心跳过缓。小蛋儿的心律在夜间会降到每分钟20几次。白天也只有50几次(只有同龄健康孩子的一半)。
• 心瓣膜置换术或修复术(开胸开心手术)。
• 至少三个面部整容手术 (重建外耳,耳道,下颌修复)。每次术后还要有数月的家中理疗。
• 骨移植脊椎修复术,为了减轻逐渐加重的脊椎侧弯和可能导致的瘫痪。
• 终生使用助听器,或听力矫正手术。
这些手术治疗很多不能从医疗保险报销,有的甚至要在接受治疗前一次付清。作为一个经历离婚的单亲妈妈和孩子的唯一监护人,竹有着难以置信的坚韧和勇气。这些年来,她拼命努力工作,可是过往的巨大医疗费用终于使竹难以负担。竹已竭尽全力,甚至把退休计划中的钱都借了出来,以给小蛋儿带来更好的治疗和生活。
虽说命运让强者愈强,苦苦独立支撑七年的竹,终于选择在今天让我们了解他们母子的境遇,原因如上所述只有一个: 为了不放弃小蛋能像正常人生活的梦想, 而她已经无力独立支付上述这些更昂贵的手术治疗费用。其实,这个七年后才在朋友圈子传起来的故事,不再只有令人唏嘘的悲情,更多的是让人肃然起敬的感叹。帮助他们仿佛就是帮助我们成为更美好的自己。是的,他们母子正在创造生命的某种奇迹,带给我们的震撼,足以励志!   折翅的小天使在等待修复他逐梦的翅膀。读到此处的你,也许心有所触,愿意献出一份爱心。无论如何, 感谢你的关注,祝福你安康幸福!



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English Version:





Help Anderson – A Little Angel with Broken Wings




Anderson was born in August 2006 six weeks ahead of the due date via unscheduled C-section. He only weighed 5 lbs. The news awaiting his mother when she’d wake up from sedation wasn’t something any mother would’ve expected. Baby Anderson had been diagnosed with congenital abnormalities, the so called “Goldenhar syndrome” and “Klippel-feil syndrome”, in addition to congenital heart diseases, kidney and spine malformation, as well as hemifacial microsomia with one missing ear. The news hit his mom Judy like a brick wall. Tears flooded her eyes and down her cheeks. Her physical pain was numbed by the acute emotional agony as she wondered if her son would survive or ever have a chance to live a normal life.
Anderson was transferred to another hospital within 2 hours after birth to the level III Neonatal ICU. He was kept there for 2 months to get ready for the heart surgery. Judy was in another hospital, bombarded with more bad news. She was experiencing medical complications herself but she managed to talk to the doctors about Anderson’s situation every day….
It turned out Judy’s condition was life threatening since she had big clots in the lung (“Pulmonary Embolism”). After her persistent complaint of chest pain, her doctor finally agreed to prescribe a CT scan before releasing her. Judy was transferred to the cardiac ICU on the 4th day of her hospital stay. For the first time in her life, she felt life was too hard and lost the will to live. She could not move, and worse yet could not see her son. Her tears dried up and she couldn’t fall asleep day or night… Until a week later when she finally saw her baby, the precious boy who was hooked to so many medical devices and whose survival depended on his mother’s love and strength. Judy realized at that moment that no matter how hard it would get, she’d have to pull it through for her son. He became her strength!
In the next seven months, Judy took Anderson to see more than 10 specialists. He had open-heart surgery at the age of 5 months. Judy’s heart broke when the nurse took baby Anderson away from her and walked towards the OR door. Anderson looked at mommy with the most beautiful smile she had ever seen. Judy held her tears and smiled back at her fragile but strong baby boy. She collapsed the second Anderson disappeared from her sight.
Every second after that was like eternity. After the surgery, Anderson had to stay in the Heart ICU for another ten days. Each new day was a day of despair and hope, tears and joy, exhaustion and reenergizing, death and rebirth … When Anderson was in the hospital, Judy ran between home and hospital, getting no more than 2-3 hours sleep at night, while trying to hold onto a full time job… 


Today at the age of seven, Anderson is a thriving second grader. He likes school, loves playing with his friends, reading books and playing computer games. Anderson came into our lives three years ago when he and Jake attended the same pre-school. The boys became buddies and had many play dates.
More corrective surgeries are awaiting Anderson in the years ahead:
- Installation of pacemaker to help his Progressive Bradycardia condition. His heart rate goes down to 20s at night and up to only 50s during the day.
- Pulmonary valve repair or replacement surgery (open heart)
- Bone grafting surgery to reduce the significance of scoliosis, which will be performed at mid to late stage of puberty year.
- Three craniofacial surgeries (reconstructions of outer ear and outer ear canal; corrective jaw surgery) followed by months of in-home post-surgery therapies.
- Lifetime hearing aids or preferably hearing aid surgery
Medical insurance doesn’t cover most of these surgeries. Being the single mother who has sole custody of Anderson, Judy is working hard to come up with the funds to pay for the procedures in order to improve the quality of life for her son.


Together we can mend the broken wings of this little angel so that he can fly as high as he wants.

 
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