高尔夫球手筹款买天价药
Since announcing himself on the world stage with a PGA Tour victory as a rookie in 2019, Chile's Joaquin Niemann has established himself as one of golf's most exciting prospects.
自2019年以新秀身份赢得美国职业高尔夫球联盟巡回赛冠军，宣布自己在世界舞台上亮相以来，智利的杰昆·尼曼已成为了业内最有前景的新星之一。
It's been a whirlwind six months on the course for the Santiago native and a series of outstanding results have seen the 22-year-old break into the world's top-30 for the first time.
对于这位来自圣地亚哥的球员来说，六个月的训练经历就像一阵旋风，一系列出色的成绩让这位22岁的球员首次跻身世界前30名。
It's events at home in Chile, however, that will define this past year for Niemann.
这些赛事都是在智利举办的，不过，它们将考验过去一年里尼曼训练取得的成果。
"My cousin was born in October and in the beginning, it was amazing," Niemann tells Living Golf's Shane O'Donoghue.
“去年十月我的侄子出生了，刚开始的时候，大家都很开心，”尼曼告诉《高尔夫生活》的记者肖恩·欧·唐诺河说。
However, joyful video calls home to celebrate the arrival of a new family member were short lived.
然而，他开心地跟家人视频通话庆祝新家庭成员降生的愉悦突然被打断了。
"After a couple of weeks, we found out that he had a really rare disease ... in the beginning, we had no idea what it was and over time, we figured out that it was bad."
“几周后，我们发现他得了一种非常罕见的病……一开始，我们不知道它是什么，随着时间的推移，我们发现这种病很难治。”
Niemann's new-born cousin, Rafita Calderon, had been diagnosed with Spinal Muscular Atrophy (SMA), a rare inherited disorder stemming from a defective gene that leads to the death of nerve cells responsible for moving muscles that allow us to walk, talk, breathe and swallow, according to the National Institute of Neurological Disorders and Stroke.
尼曼新生的表妹,拉芙塔·卡尔德隆,被诊断出患有脊髓性肌萎缩(SMA),一种罕见的遗传疾病源于一个有缺陷的基因,导致神经细胞的死亡负责移动肌肉让我们走路,说话,呼吸和吞咽,这是来自美国国家神经疾病和中风研究所的报告。
Calderon required a one-time intravenous shot of the gene therapy medicine Zolgensma, labeled "the world's most expensive drug."
卡尔德隆需要一次性静脉注射基因治疗药物Zolgensma，它被称为“世界上最昂贵的药物”。
As many as 1 in 8,000 babies is estimated to be affected by one of the genetic mutations that causes it.
据估计，每8000个婴儿中就有1个会受到导致该病的某种基因突变的影响。
That includes about 450 to 500 infants in the US per year, according to a Novartis -- the parent company which markets Zolgensma -- statement.
佐根斯玛的母公司诺华在一份声明中表示，这其中包括美国每年约450至500名婴儿。
The treatment works by replacing a working copy of the defective gene into the nerve cells before they die and symptoms develop.
这种治疗方法是在神经细胞死亡和出现症状之前，将有缺陷的基因拷贝替换到神经细胞中。
"We started getting really worried about it and a little desperate because the only medicine and the only cure to help him live for more than two years would cost $2.1 million -- we were going out of our minds," explains Niemann.
尼曼解释说:“我们开始非常担心，甚至有点绝望，因为唯一能让他活两年多的药物和治疗方法要花费210万美元——我们都快疯了。”
"In the beginning we were like: 'Oh my god, how are we going to do this? How are we going to get the money? Because if we don't, he's going to die.'"
“一开始我们的想法是:'哦，天哪，我们该怎么做呢?我们怎么弄到钱?因为如果我们没有钱，她就会死。’”
With Calderon's father leading the fundraising efforts in Chile, the country's best-known golfer set about doing everything he could from his home away from home, the PGA Tour.
随着卡尔德隆的父亲在智利领导筹款工作，这个国家最著名的高尔夫球手开始在他的家乡——美国职业高尔夫球协会巡回赛上卖力打球。
"Rafita started getting a lot of attention on social media in Chile and they made a lot of money, but it still wasn't enough, so I decided to start donating money during golf tournaments," says Niemann.
尼曼说:“拉菲塔开始在智利的社交媒体上获得大量关注，他们赚了很多钱，但仍然不够，所以我决定开始在高尔夫比赛期间进行募捐。”
"To get so much support from the PGA Tour, from the players and on social media was amazing. Now we're in March and we got the medicine a month ago, it feels amazing to achieve something like that," said Niemann.
“能从美巡赛、球员和社交媒体上得到这么多支持真是太棒了。现在已经是3月份了，我们一个月前就拿到了药物，能取得这样的成就感觉很神奇。”尼曼说道。
问题
文中提到世界上最昂贵的药物是什么？
留言回复正确答案，前五名朋友可以获得红包奖励哦 ，赶快来试试吧！
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