請大家留意一下這個病(SMA)，多一點留意，多留一條人命

Chompol

大家好，其實我是香港人，但因移民了到美國，近幾年才回流香港，所以這篇帖子都佔了一大堆英文。
其實如果不是非必要的，我都不會在這裡發帖子，但我真的沒想過，我真心求助，希望有網民會幫助的時候，最終竟然是被美國的其中一個論壇ban了帳號，使我感到無奈。。
我其實是想大家多留意這個病，這個病叫做SMA，亦稱脊髓性肌肉萎縮症，然而這個病分三型，其中第一型為最嚴重者，亦是我女兒最近確診的...
這個是我發的部落格，希望藉此尋求幫助。Ｍｙ　ＳＭＡ　Ｄａｕｇｈｔｅｒ

Thank you for you guys clicked in and believed in me. Now let me introduce myself.
Actually, I am Hongkonger, I moved to America in 2000. Then I moved back to Hong Kong in 2015 due to my wife.
After that, our daughter was born in 13.11.2016.

We glad that our family has a new life, new member.
She always makes us happy, fancy face, crying baby etc.
We thought she is same as other babies, unfortunately, it is not.
When she was four months old, we saw she was hard to breathe.
Then we took she to the hospital.
In the beginning, we think she just caught a cold.
After a week, the doctor calls me,"Good morning, Mr.Tse, I have a bad news to tell you, we are hard to tell you, but it is necessary. Your daughter has confirmed......suffered from SMA."
At this moment, I have lots of questions. What is SMA? How is my daughter? What can I do?
What is SMA?....
according to "link"
Spinal Muscular Atrophy (SMA) is an inherited disease that affects approximately 1 in 10,000 infants born in the U.S. each year. There are four types of SMA, based on the degree of symptoms, with SMA Type I being the most severe.

...Yes, my daughter was SMA type I patient ...
It sounds like type I was the safest, but it's not.

According to SMA type I
SMA type I is a serious condition. Children with this disorder never manage to sit or stand. It is usually fatal before the age of 2 years.It can be detected before birth, as there may be a reduction in fetal movement during the final months of pregnancy. If not, it will become evident within the first few months of life.Infants with SMA type I never sit or stand, and they do not usually survive to the age of two years. SMA type I is also known as Werdnig-Hoffmann disease.
I felt helpless after I receive this message. First, the doctor told me SMA is can not be cured. Second, SMA type I patient has just maximum 2 years life. What can I do? Can I hold her hand and take her to school? Can I hold her hand and play with her?Can I hear she call me Daddy? I afraid that this kind of things was just a dream....I never think this is a nightmare.
After two months, it's about May. The doctor calls me again," Mr.Tse, I got a good new from America. Some scientist was discovered new medicine to treat SMA." Then, the doctor suggests me to accept this therapy. However, new medicine is extremely expensive is well-known. Apparently, this medicine is very costly. Here is the information.
" That price means the first year of treatment will likely cost $625,000 to $750,000 for five or six injections. And subsequent years of three injections annually will be about $375,000."(USD)
......................................I was shocked by the price..............How can I afford this cost? I was just a normal white collar. Just about $50,000 a year. Is that mean I cannot save my daughter?

Although it is a hard way, I determine to accept the treatment. So, I work harder and harder.OT and OT, it's always happened. But I don't care. All I want to do is afford the money. But, is it possible? Or is it possible to earn enough money before she is two?
All my friends, all my relative told me, it is impossible.....

Now, I work hard every day and bet on Mark-Six(Hong Kong Only legal gambling club) I can bet HKD10 and win back HKD5,000,000 or above. But is it possible? In HK, less than 200,000 citizens have won the First Prize in the last 30 years... So, let me believe the God.

Finally, I hope that the internet can help my daughter. I have already tried my best.
I know that it is hard to believe me, but if you believe me, can you donate to me?...
If you're not, you can leave this page...
What if everybody can donate 1 dollar? What if everybody reach out their hand?
I think my daughter can be cured.
If you believe me, please share this message. Let all the people in the world concern about this disease, take a body check before planning to have a baby.

Here is my Paypal account.
Please believe me, you are saving a life.
Assume that I am deceiving you, but here is just a dollar...
Please... I think this is my last chance.....
God bless you!

其實這段文章有很多圖片，所以如果相信我的話，希望你們可以看看我的部落格，伸出技

hoongyin07

帮不到你

帮你 bump post 吧  

lok

可以通過某某慈善機構幫忙籌款。。效果可能比較快 比較有效過你在這開帖。。（個人認爲）

Chompol

lok 发表于 16-8-2017 04:40 PM
可以通過某某慈善機構幫忙籌款。。效果可能比較快 比較有效過你在這開帖。。（個人認爲）

在香港有找過慈善機構幫忙...他們說會再聯絡我，但都兩個月了，一些消息也沒有。。。

Chompol

hoongyin07 发表于 16-8-2017 03:30 PM
帮不到你

帮你 bump post 吧

感謝你。。願天下有心人會救救我的女兒，單憑我單人的能力未能幫助到我的女兒，但我相信每人伸出一點點援手，就能渡過難關。。

ckc509

愿孩子平安

sea456hee

“Now, I work hard every day and bet on Mark-Six(Hong Kong Only legal gambling club) I can bet HKD10 and win back HKD5,000,000 or above. But is it possible? In HK, less than 200,000 citizens have won the First Prize in the last 30 years... So, let me believe the God.”

大家发现什么问题吗？

Chompol

sea456hee 发表于 18-8-2017 12:26 PM
“Now, I work hard every day and bet on Mark-Six(Hong Kong Only legal gambling club) I can bet HKD10 and win back HKD5,000,000 or above. But is it possible? In HK, less than 200,000 citizens have won  ...

只能願幸運之神眷顧我一次，但是女兒都確診這種病，還是幸運嗎...? 現在女兒呼吸都要靠呼吸機了，每天都在擔心。

jellyfish_8

网上赌博是包输，庄家可以看闲家的牌；可以自己偷换牌