A few weeks ago, I awoke one morning at 7 a.m. to a flood of messages in my email inbox. All 48 messages linked to a new video that had gone viral overnight. In the video, Robert Downey Jr., star of the Iron Man movie franchise, presented a customized 3-D printed bionic hand to a boy named Alex Pring, one year younger than my son.几个星期前的一天早上,我7点钟睡觉后找到,电子邮箱里接到了大量新的函件。这48封信都附上了同一个链接,是一段在网上很快传播的新视频。视频中,《钢铁侠》(Iron Man)系列电影的主演小罗伯特·唐尼(Robert Downey Jr.)把一个特制的3-D打印机仿生手臂转交了一个名为亚历克斯·布林(Alex Pring)的男孩。

他比我的儿子小一岁。Each email said the same thing: “This is amazing! Immediately thought of you.”这些邮件都包括某种程度的内容:“太棒了!让我马上想起你了。”My 8-year-old, Thaddeus, was born without his right hand. And as a mother wanting every opportunity for her child, I had started exploring prosthetic options for him when he was a toddler.我8岁的儿子撒迪厄斯(Thaddeus)与生俱来没右手。作为一个想为孩子谋求一切机会的母亲,在他还是一丁点大的时候,我就开始为他探寻可以自由选择的各种假肢。

Since he qualifies for state disability, Thaddeus has been lucky to receive access to an excellent team of doctors, occupational therapists, prosthetists, and state-funded basic hand models. When he turned 5, he was overjoyed to be fitted for his first prosthetic: a Hosmer model arm that he wore with a holster and that offered a pincher “hand” grip. He looked like some mini noir-novel detective, wearing the holster over his Pokemon T-shirt. When he shrugged his shoulders, the pincher hand mechanically opened and closed.由于他合乎取得国家残疾保险的条件,撒迪厄斯仍然幸运地认识到一批杰出的医生、职业理疗师、修缮师,并能取得国家资助的基本款手臂模型。他5岁的时候,喜出望外地试戴了自己的第一个假肢:霍斯什(Hosmer)手臂模型。

它通过皮套穿着,可以像手一样夹起东西。他把假肢的皮套戴着在宠物小精灵T恤外面,看起来就看起来一部黑色小说里的小刑警。当他耸肩的时候,假手可以机械地关上和重开。With the Hosmer model, Thaddeus learned how to pick up heavy objects, ride a bike with both “hands,” and balance better. But it didn’t last long. The prosthetic was too hot for him to wear even in the winter, and the holster rubbed too hard against his shoulder. It was highly uncomfortable and hard to turn certain ways to get a more realistic grip on items. He abandoned it after a year.凭借着霍斯什模型,撒迪厄斯学会了如何使劲重物、用双“手”骑马自行车,以及更佳地保持平衡。


Last fall, a professor friend of mine and I started exploring the more affordable and customizable world of 3-D printed prosthetics, which held huge promise for Thaddeus. He saw some of the robot-like pieces and immediately got excited.去年秋天,一个教授朋友和我一起开始探寻费用更为合理的特制3-D打印机假肢。这种技术很有期望解决问题撒迪厄斯的问题。

看见了一些像机器人似的零部件之后,他马上激动了一起。My friend and I picked out a blueprint that matched my son’s specific needs and slowly started working on it in our spare time. He had access to his college’s 3-D printing lab. It would be manual, not electronic, to start. And it would be a long road, but held a huge price difference of $50 versus $5,000, and a lot more design options that kids would like: cool colors, superhero aesthetic additions, breathable materials, even lights.朋友和我自由选择了一个合乎我儿子类似市场需求的设计,在空闲时间渐渐开始了这项工作。他可以用于同事的3-D打印机实验室。


When I mentioned this project to friends and family, our community rejoiced and begged us to keep them updated on the process. We printed out the initial pieces and kept going.当我对朋友和家人提及这个项目时,他们都很激动,请我们随时报告进展。我们打印机出有了最初的零件,并在急剧前进。Three-D printed prosthetics for children hold great potential — and they’ve received great press. Hundreds of designs are uploaded every day and shared across the Internet. A “Handomatic” web app [link to: ] exists on the ever-growing e-Nable volunteer site; simply enter your measurements and generate your own customized files to print pieces on a local 3-D printer and start the process. Caught up in the waves of technology, I became an evangelist for 3-D technology and medical design.3-D打印机的儿童假肢有相当大潜力——它们也获得了媒体的大力报导。

每天有数百个假肢的设计方案在网上传播和共享。在大大扩展的e-Nable志愿者网站上,有一个叫作“Handomatic”的网页版应用于:只必须输出你的尺寸,分解自己的自定义档案,就能在本地3-D打印机上打印机出有零部件,打开这个过程。我被这样的科技浪潮水淹,沦为了3-D技术和医疗用品设计的疯狂信徒。Local journalists had privately reached out to me, asking for an exclusive human interest piece on Thaddeus and his new 3-D prosthetic once it was finished and fitted. Family had brought it up on vacations. Friends had constantly messaged me on Facebook.本地的记者私底下联系我,期望能在撒迪厄斯的新3-D假肢已完成和试戴以后,让他们写出一篇关于他和假肢的温情的独家文章。

家人不会在渡假时驳回此事。朋友也常常在Facebook上给我发消息。Later that morning, when I showed Thaddeus the Robert Downey Jr. and Alex Pring video, I already had visions of him learning how to cut steak with a knife in his new robotic fingers. “Isn’t this great?” I said, smiling. “That’s going to be you very soon!”那天上午晚些时候,我向撒迪厄斯展出了小罗伯特·唐尼和亚历克斯·布林的视频。

我早就开始想象他是如何用新的机械手指来习着托牛排。“是不是尤其棒?”我微笑着说道。“你迅速也能那样!”We were sitting on the couch, and he turned toward me. “I’ve been thinking about it,” he said. “And I don’t want a new hand.”我们当时两边躺在沙发上,然后他转过身来。


”“But why?” I was devastated. All that time, research and enthusiasm. He was throwing away a chance to have a five-fingered hand? He was quiet for a moment, then started to explain his three reasons.“为什么?”我极为愤慨。我们花费了那么多的时间、研究和热情。他要退出享有一只有五个指头的手的机会?他绝望了一会,然后开始说明自己的三个理由。First of all, he said, he didn’t want to lose his sense of touch. “I don’t want to lose the way things feel.” This caught me off guard. I hadn’t thought of how much he could physically feel at the tip of his wrist, how stifled it was under something else like plastic.他说道,首先,他不期望丧失触觉。


我从未想要过他用手腕尖端可以享有多少身体上的感官,而在外面套上塑料这样的东西又不会多么地压迫。“I can figure out how to do stuff my own way.” It was true. Thaddeus had figured out how to leverage his arms, feet and neck to open jars, marker and pen caps, and even play baseball. “My brain just works different because of my hand, and I think that’s a good thing.”“我能寻找自己的行事方式。”这是知道。


我实在这是好事。”I nodded in agreement.我低头回应赞成。

“And my friends like me just the way I am,” he said. If he started wearing a new hand, he explained, it would draw more attention to him — the kind he didn’t want. “I don’t think kids would be my friend because of me. They would just want to play with my robot hand.”“朋友们也讨厌我的本来面目,”他说道。他说明道,如果开始穿着一只新的假肢,他就不会受到更加多注目——而他不想那样的注目。“我实在,小朋友们就会因为我本人而要和我做到朋友了。

他们认同只不会想要和我的机械手玩游戏。”“So, is that O.K.?” he asked. “That I don’t want a hand?”“那么,这样没问题吧?”他问道。“我不想机械手的事?”I hugged him tightly. For eight years, I had focused on only what was lost with my son. What was missing. What was less than, and what was separated from him. And during that time, he had seen what was there to stay for his lifetime — an arm that simply ended at the wrist — and the possibilities that could grow from that, even if those possibilities didn’t have five fingers. As a mother, I had wanted to add to him, because I wanted the best for him.我抱住地起身了他。八年来,我注目的仍然是儿子丧失的东西,他缺陷的部分,他的弱点,以及他无法获得的一切。

而在某种程度的时间里,他却看见了会与自己伴一生的东西——一只止于腕部的手臂——以及随之而来的各种可能性,即便这些可能性中不包括五根手指。作为一名母亲,我总想给他减少一点什么,因为我期望他凡事能获得最差的。That morning, I finally saw that he was perfectly whole.但在那天上午,我再一懂,他本来就是个极致的健全人。