Name: 一個父親為治療孩子的藥物而奮鬥的故事 (A father's fight for a drug to treat his kids)
Uploaded: 2021-01-16T19:05:18.000Z
Duration: 2 min 19 s

程度副詞

Man has spent 17 years battling to save his Children from an incredibly rare genetic disease and find a reliable and approved treatment.

男子花了17年的時間來拯救他的孩子，使其免受一種非常罕見的遺傳病的折磨，並找到一種可靠的、被認可的治療方法。

情態副詞

And eventually he did, in the form of an unusual product.

最終他做到了，以一種不同尋常的產品的形式。

We killer Knicks Zeros Sons have what's called black bone disease, formerly known as Al Captain Yuria or a k U for short.

我們殺手尼克斯零子有一種叫黑骨病的病，以前叫阿爾上尉尤里亞，簡稱k U。

So aka you is an ultra rare genetic disease effects Roughly one person in half a million on it's due to a mutation in a gene, which means that patients can't break down a certain acid that accumulates in cartilage and bone and goes black, which is why it's called black bone disease.

所以，又名你是一種超罕見的遺傳病影響 Roughly one person in 50 million on it's due to a mutation in a gene, which means that patients can't break down a certain acid that accumulates in cartilage and bone and goes black, which is why it's called black bone disease.

And over the years that leads to severe joint deterioration, spinal problems, heart problems and intense pain.

而多年來，導致嚴重的關節退化、脊椎問題、心臟問題和劇烈疼痛。

Ciro's eldest son, Julian, was diagnosed as a baby, but symptoms can be delayed until the patient is an adult.

Ciro的長子Julian在嬰兒時期就被診斷出了，但症狀可能會延遲到患者成年。

He's now 20 as a patient at the National Al Captain Nouria Center in Liverpool.

他現在20歲，是利物浦國家阿爾上尉努里亞中心的病人。

He has had early access to a weed killer derived drug called night is unknown.

他已經提前接觸到了一種名為 "夜 "的除草劑衍生藥物，情況不明。

Scientists knew United Simone should help prevent the damage but needed to prove it.

科學家知道聯合西蒙尼應該有助於防止損害，但需要證明這一點。

Using large scale clinical trials mhm, but with only 1000 known suffers worldwide, there was no help from big drug companies.

採用大規模的臨床試驗hm，但全球已知的受難者只有1000人，沒有大藥廠的幫助。

So 10 years ago, zero gave up his job to concentrate on the campaign.

所以10年前，零號就放棄了工作，專心致志地參加競選。

The research did prove notice in own works, not only stopping symptoms developing but even reversing some of the damage done.

研究確實在自己的作品中證明了通知，不僅阻止了症狀的發展，甚至扭轉了一些傷害。

It has now been licensed by the European Medicines Agency on for the last three years while taking notice unknown, Julian has been symptom free.

它現在已經由歐洲藥品管理局許可的過去三年，同時採取未知的通知，朱利安一直沒有症狀。

If I wasn't on the drug, it could be that within the next 10 years it will likely within the next 10 years.

如果我沒有吃藥，可能在未來10年內，很可能在未來10年內。

I would definitely feel the effects, Um, in my joints.

我肯定會感覺到效果，嗯，在我的關節。

 Uh, possibly my heart valves, um darkening or like dark spots in the eyes is just everywhere there's cartilage or anywhere that something called a Kronos ISS can form the A. 

呃，可能是我的心臟瓣膜，嗯變黑或者像眼睛裡的黑點就是到處都是軟骨或者是任何地方的東西，叫做Kronos ISS可以形成A。